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The Perfect Defect This work is considered exceptional by our editorial staff.

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It’s been said that life is what you make it. Two versions of this maxim, If life gives you lemons, make lemonade and Bloom where you’re planted, have been utilized on Post-It notes, coffee mugs, t-shirts, and bumper stickers. My mom, who was born with a rare birth defect, sums up life (and what you make it) very well with a poem written by Dorothy Parker that she came across and memorized while in high school: Razors pain you; rivers are damp; acids stain you; and drugs cause cramp. Guns aren’t lawful; nooses give; gas smells awful; you might as well live. To see my mom, you would never know that her birth defect resulted in her being “different.” All I see when I look at my mom is the person who brought me into this world and has lovingly taken care of me ever since. My sense of humor, my inner strength, my compassion and ability to empathize, and even my positive outlook on life are attributed to her… and her alone. Watching and listening to how Mom deals with her birth defect with dignity, humor, and irony has been inspiring; and, in many ways, has made it the “perfect defect.”

Ectodermal dysplasia is a congenital birth defect in which two or more ectodermal-derived structures (such as skin, hair, nails, teeth, sweat glands, or mucus membranes) develop abnormally. People who are born with it are affected in various ways and in different degrees of severity. In my mom’s case, she was born with a lack of sweat glands and hair follicles (eyebrows and eyelashes are absent as well). Due to her inability to perspire, she also lost most of her hearing and has been wearing hearing-aids since third grade. Mom says God always throws a bone to those He maims. In other words, even though she was born with this birth defect, she was also blessed with an art talent; thus, she can cosmetically create an illusion and look just like everyone else.

She started wearing wigs in fourth grade – that’s also when she began dreading windy days. Mom says that on windy days, the wind blows through everybody’s hair; but when it’s blowing through her hair, she has to swallow her pride and run after it. Whenever we’re out in public and a stranger happens to compliment Mom on the color of her hair or how it’s styled, she’ll lean in close and respond in a quiet, intimate undertone, “Thank you, you can borrow it anytime.” Some kids would probably be mortified to be present during such an exchange, but Mom choosing to defuse (what could be) an awkward situation by interjecting self-deprecating humor is enlightening. Every encounter results in the stranger looking at Mom with both admiration and appreciation for her honesty and humorous perspective. What most people don’t realize is that Mom’s honesty and humorous viewpoint about herself is actually a choice. Throughout her adolescence, she was subjected to people who weren’t receptive to her being born different – and some of those people were downright unkind.

Mom was born in the 1950s and had an idyllic childhood. She was fortunate to have two parents who had lived through the Great Depression, were well-grounded in their faith, and always practiced the art of appreciating life’s ironies. It was the kids in Junior High who made Mom wish at times that she had never been born. I always cringe when I think about what she endured during those school years, but I’m also able to see where her incredible resilience began.

When Mom was in school, Junior High was comprised of grades seven through nine. It was a large group of ninth grade guys that would target her for their abusive enjoyment (Mom refers to them as “the biker wannabes”). Every day, during the school lunch hour, this group of eight to nine guys would encircle my mom like a pack of wolves. The ones in front of her would distract her by verbally taunting her, while the ones behind her would snatch her wig off and proceed to throw it over her head to one another, as though playing a game of catch. This would go on until the group tired of the game or a noon-duty teacher would arrive. Mom began spending the first half of the lunch hour hiding out in the girls’ bathroom, while eating and reading a book. Then she would try to make an inconspicuous beeline for the sanctuary of the school library. There she could relax under the ever-watchful eyes and listening ears of the school librarian who wouldn’t tolerate aberrant behavior of any sort. (To this day, my mom treasures the hushed, austere, reverent atmosphere that all libraries generate.) It was during the second semester of seventh grade that a wonderful woman, named Mrs. Thomasina Pleasant, took Mom under her wing and gave Mom the life-tools that she uses to this day.

Mrs. Pleasant, who embodied the life-is-what-you-make-it maxim, revealed to mom that being born different wasn’t necessarily a curse to be ashamed of or something to feel trapped by; it was a gift. And choosing to embrace that gift would result in an easier-lived life and one with unlimited possibilities. This advice struck a chord with my mom in more ways than one. First, it resonated with what Mom had learned while growing up in the church. Second, this exchange occurred before mandatory school busing began in Southern California and Mrs. Thomasina Pleasant wasn’t just the Girls’ Vice-Principal – she was also the only African-American in the school at that time.

It’s been forty-plus years since my mom attended Junior High… and she still dreads windy days. The amount of work she has to go through every morning just to go out the door is not necessarily something she enjoys. To Mom, putting on her make-up and wig is just another daily chore – similar to making the beds or taking out the trash. She often jokes that the day she stops wearing make-up, stocks in cosmetic companies will probably go down two or three points. It’s this ever-present sense of humor of hers, along with the acceptance of what she was born with (or, perhaps, born without), that I find so inspiring. She has taught me that I shouldn’t take what happens in life too seriously; to look for the humor in everything, because it’s always there; and that sometimes things aren’t as bad as they seem – and even if they are, they’ll eventually be overcome. Life really is what you make it. Or, to paraphrase my mom: Life may be crummy at times, but it’s still doable.





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