When people give me funny looks in the grocery store or whisper behind my back, I don't think much of it. Not anymore, at least. Growing up with a rare skin condition makes life, well, different. I would imagine few of you have had people take one look at you and declare, "You have no right to live." Sadly, I have had people do that to me. Not the best experience in the world, but not the worst either. I look at my skin as an opportunity rather than a curse, which has made it a lot easier to live with.
For those of you who are unfamiliar with me (or my skin), let me give you the "debriefing." I have a genetic condition called ichythosis. Or, rather, I have a form of it called epidermolytic hyperkeratosis. To give you an idea of what my skin looks like, here is a little video I made during undergrad introducing my skin.
This month is very exciting for me, because it is Ichthyosis Awareness Month. What this means is that people all around the world are going to celebrate and share their stories about living with ichthyosis. Awesome, right? I am going to try to get on board as much as I can. Unfortunately, due to graduation and moving 1800 miles this month, I won't be able to participate in the fundraisers and such going on around the country. But, I wanted to do what I could to help. So, each day I am going to try to write a blog post sharing an experience, however short, related to my skin disorder. For instance, tomorrow I am going to tell you about what it's like to teach with ichthyosis. I am going to try to do this all through May. Fingers crossed!
My story for today is going to be very short: The only time I got a sunburn. All my life, I have marveled at people who have turned various shades of red when left out in the sun for too long. From the lobsters to the blushers, I was fascinated that their skin changed color - that they could burn. I had never, in all my life, experienced anything remotely like it. My skin disorder makes it so I can't burn: it's too thick. One week, though, I spent almost all my waking hours outside. As usual, I did not use sunscreen - never have, since my skin doesn't allow uv rays to go deep enough to be a problem. At the very end of the week, I looked in the mirror and noted (with pleasure) that the very tip of my nose was a bright pink. I had burned! (Almost.) It was my very first sunburn, and I was proud of it. All that next week I showed people my burn, even as it faded away. I've still yet to burn again, and part of me is somewhat grateful for that. After all, sunburns sure look painful!
Showing posts with label epidermolytic hyperkeratosis. Show all posts
Showing posts with label epidermolytic hyperkeratosis. Show all posts
Wednesday, May 1, 2013
Friday, January 20, 2012
Modern Monsters
As a Renaissance scholar, one of my areas of scholastic interest is the field of monster studies. This is an admittedly odd pursuit--it is neither in vogue or particularly well regarded--but I persist in it anyway. The other day, one of my colleagues asked why I liked monsters so much. I smiled at her and said simply, "Because I understand them."
During the sixteenth century, a man by the name of Ambroise Pare published a book called Des monstres et prodiges (or, in English, On monsters and marvels). This book represents one of the first attempts to explain birth disorders and acts as a foundation for monster studies. In it, Pare covers everything a girl with fur to a unicorn. Some of the monsters in the book are particularly difficult to believe (after all, there are very few half-ox half-human beings roaming around). Others, though, hit very close to home. After all, I have a feeling that twins would be very upset if they knew they would have been viewed as monstrous entities.
One of my favorite monsters in all of literature is Richard III (from William Shakespeare's Richard III). He is traditionally played as a heavily handicapped man, usually with a humped back and at least one gimp limb. Normally this sort of figure would be comical or dismissed, but Richard's too cool for that. Instead, he's the villain and protagonist of the play. The entire story focuses on his rise to power and subsequent fall, but he's such an awful person that it's almost impossible to call him a hero. The opening lines of the play are delivered by Richard. He is alone on stage and says,
Basically, he's saying that the conflict between the House of Lancaster and the House of York has temporarily subsided, because his brother (the son of York) has become king. With the war put aside, Death is instead busy getting up to shenanigans, and pretty everyone is having a great time. Except Richard. He goes on to say,
Richard is bitter, because he is unloved. His deformity caused him to be outcast since "monsters" were viewed as subhuman. In revenge for this mistreatment, Richard decides to get some revenge by destroying everyone's happiness. The rest of play follows the outline of his plans--though there is a small hitch in the form of Richmond (your prototypical heroic pretty boy). I understand entirely where Richard is coming from. Nobody, not even his mother, loved him. If I were in that in position, I would probably not be a very nice person either.
Of course, I think I understand him so well because I am a monster too. I have a genetic skin disorder by the name of epidermolytic hyperkeratosis, which causes my skin to grow fast and form thick scales all over my body. (Yes, even there.) Had I been born during the Renaissance, my birth would have been the focus of a broadside. I probably would have been lauded as the Alligator Human. Oh, wait, there's a site that has an article about that: Human Marvels. Point in fact, any time up until the mid-1900s I would've had to make my living as either a beggar or a side-show freak. Or, like Richard, I could've just been a diabolical villain. Take your pick.
Sadly, it took a long time for life to get better for the "monsters" of the world. Disabilities are still taboo. Going through stores, walking the street, even just attending class--I get stared at. People whisper (thinking I'm deaf) about how offensive they find my existence. "What is a freak like that doing out in public?" "That thing has no right to live." "It better not reproduce." Yes, people have said all of those things about me and to me... and worse.
Times are changing. In 1977, America finally emancipated its disabled citizens. Congress signed the American's with Disabilities Act (ADA), and we finally had rights. But why did it take so long? Am I really that different from you? I don't think so. There's a documentary by the name of Lives Worth Living, and it tells the story of the fight to pass ADA. If you want a taste, watch this:
In a way, my study of monsters is studying my heritage. All of the stigma, all of the hatred, and all of the determination that come with being disabled are mine. But they belong to millions of other people, too. Through my writing and scholarship I hope to shed light on the evolution of how disabilities have been viewed. I hope that it creates conversation and understanding. I hope that it encourages people to not be afraid. Most of all, I hope to make a difference.
I am a modern monster. A mutant. An ichthyosaur. But I'm also human. Maybe you should treat me like one.
During the sixteenth century, a man by the name of Ambroise Pare published a book called Des monstres et prodiges (or, in English, On monsters and marvels). This book represents one of the first attempts to explain birth disorders and acts as a foundation for monster studies. In it, Pare covers everything a girl with fur to a unicorn. Some of the monsters in the book are particularly difficult to believe (after all, there are very few half-ox half-human beings roaming around). Others, though, hit very close to home. After all, I have a feeling that twins would be very upset if they knew they would have been viewed as monstrous entities.
One of my favorite monsters in all of literature is Richard III (from William Shakespeare's Richard III). He is traditionally played as a heavily handicapped man, usually with a humped back and at least one gimp limb. Normally this sort of figure would be comical or dismissed, but Richard's too cool for that. Instead, he's the villain and protagonist of the play. The entire story focuses on his rise to power and subsequent fall, but he's such an awful person that it's almost impossible to call him a hero. The opening lines of the play are delivered by Richard. He is alone on stage and says,
Now is the winter of our discontent
Made glorious summer by this sun of York;
And all the clouds that lour'd upon our house
In the deep bosom of the ocean buried.
Now are our brows bound with victorious wreaths;
Our bruised arms hung up for monuments;
Our stern alarums changed to merry meetings,
Our dreadful marches to delightful measures.
Grim-visaged war hath smooth'd his wrinkled front;
And now, instead of mounting barded steeds
To fright the souls of fearful adversaries,
He capers nimbly in a lady's chamber
To the lascivious pleasing of a lute.
Basically, he's saying that the conflict between the House of Lancaster and the House of York has temporarily subsided, because his brother (the son of York) has become king. With the war put aside, Death is instead busy getting up to shenanigans, and pretty everyone is having a great time. Except Richard. He goes on to say,
But I, that am not shaped for sportive tricks,
Nor made to court an amorous looking-glass;
I, that am rudely stamp'd, and want love's majesty
To strut before a wanton ambling nymph;
I, that am curtail'd of this fair proportion,
Cheated of feature by dissembling nature,
Deformed, unfinish'd, sent before my time
Into this breathing world, scarce half made up,
And that so lamely and unfashionable
That dogs bark at me as I halt by them;
Why, I, in this weak piping time of peace,
Have no delight to pass away the time,
Unless to spy my shadow in the sun
And descant on mine own deformity:
And therefore, since I cannot prove a lover,
To entertain these fair well-spoken days,
I am determined to prove a villain
And hate the idle pleasures of these days.
Richard is bitter, because he is unloved. His deformity caused him to be outcast since "monsters" were viewed as subhuman. In revenge for this mistreatment, Richard decides to get some revenge by destroying everyone's happiness. The rest of play follows the outline of his plans--though there is a small hitch in the form of Richmond (your prototypical heroic pretty boy). I understand entirely where Richard is coming from. Nobody, not even his mother, loved him. If I were in that in position, I would probably not be a very nice person either.
Of course, I think I understand him so well because I am a monster too. I have a genetic skin disorder by the name of epidermolytic hyperkeratosis, which causes my skin to grow fast and form thick scales all over my body. (Yes, even there.) Had I been born during the Renaissance, my birth would have been the focus of a broadside. I probably would have been lauded as the Alligator Human. Oh, wait, there's a site that has an article about that: Human Marvels. Point in fact, any time up until the mid-1900s I would've had to make my living as either a beggar or a side-show freak. Or, like Richard, I could've just been a diabolical villain. Take your pick.
Sadly, it took a long time for life to get better for the "monsters" of the world. Disabilities are still taboo. Going through stores, walking the street, even just attending class--I get stared at. People whisper (thinking I'm deaf) about how offensive they find my existence. "What is a freak like that doing out in public?" "That thing has no right to live." "It better not reproduce." Yes, people have said all of those things about me and to me... and worse.
Times are changing. In 1977, America finally emancipated its disabled citizens. Congress signed the American's with Disabilities Act (ADA), and we finally had rights. But why did it take so long? Am I really that different from you? I don't think so. There's a documentary by the name of Lives Worth Living, and it tells the story of the fight to pass ADA. If you want a taste, watch this:
Watch Scaling the Capitol Steps for Disability Rights on PBS. See more from Independent Lens.
In a way, my study of monsters is studying my heritage. All of the stigma, all of the hatred, and all of the determination that come with being disabled are mine. But they belong to millions of other people, too. Through my writing and scholarship I hope to shed light on the evolution of how disabilities have been viewed. I hope that it creates conversation and understanding. I hope that it encourages people to not be afraid. Most of all, I hope to make a difference.
I am a modern monster. A mutant. An ichthyosaur. But I'm also human. Maybe you should treat me like one.
Thursday, October 27, 2011
The Disabilities Dichotomy
The fact I have a disability is pretty darn hard to miss. My skin looks like something escaped from a B sci-fi movie, and I get a lot of comments on my appearance. A lot of comments. Lately, though, something strange has been happening to me. I seem to be constantly forgetting that I have a skin disorder; I always seem to be surprised when I catch a glimpse of my skin. I know it makes no sense: how can I forget I have a skin disorder that I've had for nearly twenty-three years? Honestly, I can't explain the psychology behind it.
I have begun to think a lot about disabilities this week because of it, though. I know that there are many people who define me by my ichthyosis, and I honestly can't blame them. If one of my friends seemed to be the missing link between humans and dragons that'd stick out pretty firmly in my mind too. What surprises me the most, I suppose, are people who define me by something else. A long, long time ago (during my senior year of high school) I remember being brought to tears by a single comment. We had just finished one of the performances of the Holiday Dinner, a huge Christmas choir concert (with food) wherein I was one of the narrators. I was thinking about getting to go home and sleep off all of the wassail I'd consumed when a woman I didn't know approached me. She said, "You know, I really loved your performance. I was really touched."
My role, the Queen, had a particularly great monologue about the Savior and the meaning of Christmas. It frequently put me near tears, so I was not too surprised that it had an impact on someone else. "What really impressed me," the woman continued, "was you. I didn't notice your skin until someone else pointed it out to me. You were so confident and strong that I could only look at your eyes; you really know how beautiful you are." I was caught completely by surprise. I have never been a renown beauty; in fact, in high school I was officially one of those "awkwardly pretty" sorts that never got asked to dances. More than that, though, I was...astounded that she had not noticed my skin. I was under the impression that everyone noticed my skin first and me second. To have someone see beyond the scales was amazing. I started to cry even as I thanked her for her kind comment, which in turn made her cry My experience with that concert has always held a special place in my heart because of moments like that.
After a time I began to accept my skin as a banner of honor. I told myself that it meant I had survived the torture of elementary school, the agony of middle school, the dejection of junior high, and the loneliness of high school without giving up. I had been teased, oppressed, hurt, and neglected, but I was still alive. In some ways, pride in my disability began to get in my way. Frequently I would do idiotic things like push myself too hard or get involved in things that were unhealthy for me. (Like fencing... People who can't sweat really should not fence.) One day, though, someone asked me if I had an identity beyond my skin. The question made me uncomfortable, and with good cause. My skin was me; I was my ichthyosis. That lead to a time of major reevaluation of my priorities and paradigms. Not long after I was given a blessing to have my skin disorder healed; I was certain it would work. Weeks passed without my skin disorder clearing up, and I could tell the people around me were frustrated. They had thought that my skin needed to be healed, but what they did not realize was that I was what needed healing. My skin disorder is, in many ways, a psychological condition. Many of the ichthyosis youth hate themselves and hate their appearance. I understand why they do because I have been there and have felt that way. After the blessing, though, ichthyosis wasn't my identity, it wasn't the cross I had to bear, and it wasn't my badge of honor; ichthyosis was just something I happened to have.
Over the years I have learned to laugh at my skin. I tell little kids that I am one of the X-men (since I'm an actual mutant) and at fantasy conventions I joke that I could write the best dragon narrative ever (life with scales is never accurately represented). I've learned to smile at the people who ask me if I'm burned or dirty, and the stares don't burn into me the way they used to. My identity has changed, and I love the new way I view myself.
This week, though, I want to address something that concerns me a little. I have a very dear friend who I love very much. She always tells me how brave and smart and wonderful I am--even when I'm not. This past month this friend's brother has been the focus of a lot of media attention. He is an autistic teenager who did something I admire very much: he earned all of the merit badges in scouting. Now, I do not want anyone to misunderstand me. I think his accomplishment is fantastic, and I think he deserves all the praise this world has to give. What confuses me is that I have known several young men who have made the same accomplishment without getting any recognition beyond a little four line blurb in the town newspaper. Were their accomplishments less because they don't have autism? I had been under the impression that any young man who earned all his badges was something of a superhero, and I wish they would get as many accolades as my friend's brother.
Forgive me if I am not making very much sense. I suppose what this is all about is a matter of two words: "special" and "unique." Now, I know that these words have a whole lot of meaning behind them, and that most people can't agree on how they're different. I believe that "special" is something that comes from a person's heart while "unique" is something innate about them (like autism or ichthyosis). This week I have asked myself time and time again, "Am I special because I am unique, or am I unique because I am special?" In other words, I wonder if God gave me my skin disorder because I am special or if something special came out in my personality because of my ichthyosis. Confused yet? I know I am.
At the heart of this entire matter is the issue of how other people perceive me. I am grateful that so many people look up to me and admire all that I have accomplished; their belief in me gives me strength. I sometimes worry, though, that if I did not have ichthyosis that my accomplishments would not seem as great. I worry that I would be just like the hundreds of boys who are "normal" and are never recognized for the amazing things they do. This world would be a much better place if everyone felt like their accomplishments mattered and that no one was more "special" than anyone else. But it won't happen. What I ask instead is that people see me as a talented young woman with the determination to overcome any sort of obstacle that is put in my path rather than that "amazing girl with ichthyosis." I think most of the people in this world who are disabled feel the same way. We want to be our actions and our accomplishments rather than a single element of ourselves. Most importantly, though, I want to recognize the fantastic, amazing, and special people in my life. They have overcome so many trials and obstacles that would have brought less people down and they still find such great joy in life. They are my heroes; they are who I want to be like when I grow up. They are the truly victorious.
I have begun to think a lot about disabilities this week because of it, though. I know that there are many people who define me by my ichthyosis, and I honestly can't blame them. If one of my friends seemed to be the missing link between humans and dragons that'd stick out pretty firmly in my mind too. What surprises me the most, I suppose, are people who define me by something else. A long, long time ago (during my senior year of high school) I remember being brought to tears by a single comment. We had just finished one of the performances of the Holiday Dinner, a huge Christmas choir concert (with food) wherein I was one of the narrators. I was thinking about getting to go home and sleep off all of the wassail I'd consumed when a woman I didn't know approached me. She said, "You know, I really loved your performance. I was really touched."
After a time I began to accept my skin as a banner of honor. I told myself that it meant I had survived the torture of elementary school, the agony of middle school, the dejection of junior high, and the loneliness of high school without giving up. I had been teased, oppressed, hurt, and neglected, but I was still alive. In some ways, pride in my disability began to get in my way. Frequently I would do idiotic things like push myself too hard or get involved in things that were unhealthy for me. (Like fencing... People who can't sweat really should not fence.) One day, though, someone asked me if I had an identity beyond my skin. The question made me uncomfortable, and with good cause. My skin was me; I was my ichthyosis. That lead to a time of major reevaluation of my priorities and paradigms. Not long after I was given a blessing to have my skin disorder healed; I was certain it would work. Weeks passed without my skin disorder clearing up, and I could tell the people around me were frustrated. They had thought that my skin needed to be healed, but what they did not realize was that I was what needed healing. My skin disorder is, in many ways, a psychological condition. Many of the ichthyosis youth hate themselves and hate their appearance. I understand why they do because I have been there and have felt that way. After the blessing, though, ichthyosis wasn't my identity, it wasn't the cross I had to bear, and it wasn't my badge of honor; ichthyosis was just something I happened to have.
This week, though, I want to address something that concerns me a little. I have a very dear friend who I love very much. She always tells me how brave and smart and wonderful I am--even when I'm not. This past month this friend's brother has been the focus of a lot of media attention. He is an autistic teenager who did something I admire very much: he earned all of the merit badges in scouting. Now, I do not want anyone to misunderstand me. I think his accomplishment is fantastic, and I think he deserves all the praise this world has to give. What confuses me is that I have known several young men who have made the same accomplishment without getting any recognition beyond a little four line blurb in the town newspaper. Were their accomplishments less because they don't have autism? I had been under the impression that any young man who earned all his badges was something of a superhero, and I wish they would get as many accolades as my friend's brother.
Forgive me if I am not making very much sense. I suppose what this is all about is a matter of two words: "special" and "unique." Now, I know that these words have a whole lot of meaning behind them, and that most people can't agree on how they're different. I believe that "special" is something that comes from a person's heart while "unique" is something innate about them (like autism or ichthyosis). This week I have asked myself time and time again, "Am I special because I am unique, or am I unique because I am special?" In other words, I wonder if God gave me my skin disorder because I am special or if something special came out in my personality because of my ichthyosis. Confused yet? I know I am.
At the heart of this entire matter is the issue of how other people perceive me. I am grateful that so many people look up to me and admire all that I have accomplished; their belief in me gives me strength. I sometimes worry, though, that if I did not have ichthyosis that my accomplishments would not seem as great. I worry that I would be just like the hundreds of boys who are "normal" and are never recognized for the amazing things they do. This world would be a much better place if everyone felt like their accomplishments mattered and that no one was more "special" than anyone else. But it won't happen. What I ask instead is that people see me as a talented young woman with the determination to overcome any sort of obstacle that is put in my path rather than that "amazing girl with ichthyosis." I think most of the people in this world who are disabled feel the same way. We want to be our actions and our accomplishments rather than a single element of ourselves. Most importantly, though, I want to recognize the fantastic, amazing, and special people in my life. They have overcome so many trials and obstacles that would have brought less people down and they still find such great joy in life. They are my heroes; they are who I want to be like when I grow up. They are the truly victorious.
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