I held on to my favorite monkey, “Monkey Biz.” Sean had his arms around “Froggy,” who was wearing one of my younger brother Ted’s shirts that he had outgrown. I looked up at my friend, and stared. Sean and I had come to my house to play with my stuffed animals after school. He was blond, with blue eyes, a beautiful face and sweet disposition. Our parents had been friends for years, and so our relationship was always comfortable. Although my family would move away for long stretches of time, we always returned to Urbana and slipped back into old friendships. Although I had known Sean for what seemed like a long time, this visit was the first time I noticed that he had a rather large scar spanning his forehead. Only now, forty years later, do I see the irony of the one-fingered girl staring transfixed at another child over a mere scar. Years later Sean’s mom recalled taking us both grocery shopping one day. My hands were visible and Sean’s head was bandaged post surgery. No one bothered to ask questions—they all just stared.
“What happened to your forehead?” I asked him directly. “Why does it look like that?” “I had to have surgery when I was a baby to fix something that was on my forehead, to make it look better.” In actuality, Sean’s scar was quite minor. Although I was too young at the time to appreciate, it was clear to the older folks that Sean presumably had had a skin graft. We continued playing together, but in that moment I became very subdued. It was most likely the first time it occurred to me that others that were born with or had a physical difference could actually try and fix the abnormality.
I, on the other hand, was stuck.
The other day I read a story in the paper that caught my attention. It was about a woman named Anita Adams who has a condition known as “heterochromia.” While the name may sound as impactful as, say, “ectrodactyly,” in fact it reflects people who are born with two different colored Irises. About five years ago, Adams, now 41, began to search for an online solution. Her goal was simple, she wanted her irises to match. Adams finally found a company that might be able to satisfy her desire. The company, New Color Iris based in Panama, could apparently implant an artificial or prosthetic iris over her natural one. Despite the fact that the device was not approved by the Food and Drug Administration, nor were there any clinical studies or peer-reviewed publications about it, she flew to Panama anyway. Despite the risks, which were described in the article, Ms. Adams was “determined to fix her perceived imperfection.” At first, she was content with the results of the procedure. However, within two years, her vision began to grow spotty. Ultimately, the procedure led to her being diagnosed with glaucoma and cataracts. She had to have the implants removed in early 2011, at a cost of $5,000, which was not covered by insurance. She said that although her sight is better, now her pupils are kind of oblong instead of round and her corneas are scratched. Her eyes are back to their original different colors but she is much worse for wear.
And then I read about a fourteen-year-old girl named Nadia Ilse who was form with “dumbo-like” protruding ears. In an interview on Good Morning America (ABC) last summer, Nadia said her physical difference resulted in her being constantly bullied in school. In fact, she was so upset by the teasing that “she began to believe the negativity and began to consider suicide.” But then, a plastic surgeon heard about Nadia and she was operated on two months before the interview. When the doctor was asked why he found Nadia’s story compelling, he replied, “She wasn’t picked to have her surgery because she was bullied. She was picked for her surgery because of her deformities.” According to Nadia’s mother, “It was just something that we chose to do. It is no different than somebody having teeth that requires braces. Interestingly, Nadia’s story drew a combination of support, but also significant criticism and controversy online after the interview. “If this girl was not bullied, would she have even thought about cosmetic surgery?” And, “What will they make fun of next? Her clothes, her make-up, her hair? Should she change all these things to make others happy?” Yet others with a similar experience defended Nadia. “I had my ears pinned back when I was eleven in 1977. I was bullied before surgery and it was the best thing my Mom could have done for me.”
After reading about Anita Adams and her quest for perfection, and Nadia Ilse’s option for surgery to improve her appearance, both stories reminded me of many situations where people I have known have removed blemishes and scars not only to remove imperfections, but to look “normal.” Whether it is to feel better about themselves or to avoid being judged (or having their children judged), or both, it makes no difference, in my opinion. Admittedly, in the past my first reaction was pure jealousy. The thought that someone could wipe away physical imperfection with a simple (or even more complex and expensive) visit to a doctor was, at times, hard for me to swallow. And even though Ms. Adams’ attempt at perfection was a failure, there are countless other examples of people fixing themselves or their children with success, such as in the case of Nadia.
Before I tell you my take on this whole subject, allow me to share another story that a friend recently passed to me. It is about a young woman named Lizzie Valesquez. Although now in college, when Lizzie was in high school she was nastily dubbed, “The World’s Ugliest Woman” in a YouTube video. In fact, Lizzie was born with a rare condition that left her with no adipose tissue, and without the ability to store muscle, among other things. The comments on YouTube were vicious. Viewers called her “it” and “monster” and encouraged her to kill herself. Instead, Velasquez set four goals: To become a motivational speaker, to publish a book, to graduate college, and to build a family and a career for herself. Already at the age of 23 she has been a motivational speaker for years and is about to publish her second book, “Be Beautiful, Be You.”
When I read more about Lizzie and her outlook on life, well, she reminds me a bit of……me! In her recently on CNN to Dr. Drew Pinsky, Lizzie said, “The stares are what I’m really dealing with….but I think I’m getting to the point where… instead of sitting by and watching people judge me, I’m starting to want to go up to these people and introduce myself or give them my card and say, ‘Hi, I’m Lizzie. Maybe you should stop staring and start learning.”
And then there is also a young girl named Jordan about whom I have read a lot (her Mom Jen just wrote a Guest Flaunt for my site and blogs at: www.bornjustright.com). Jordan was born missing part of her left arm. Without the ability to “fix” her difference, she has become a role model to those who know her. In fact, she recently won the “WIN” (Women’s Intersport Network) Columbia Inspiration Award, presented to her by Olympic athlete, Jackie Joyner Kersee. I got the chance to speak with Jen recently. Jordan’s mom told me that already at the age of seven, Jordan serves as a mentor to other kids, helping them to feel proud of who they are, no matter their difference.
So here is what I think. Many people, often understandably, find themselves looking different because of anything from a transient blemish to acne to something much more severe. Although I have discovered first-hand the immense value, and even blessing, to be had from walking this earth with a blatant deformity, I appreciate how someone would want to take advantage of what is medically available to correct their own (or their child’s) imperfection. And as I just wrote, I have frankly been a bit envious in the past. As a young child, I wondered (naively) whether my missing fingers would suddenly blossom. As a teen, if you told me I could add eight fingers and eight toes, I would have certainly explored the idea. However, by not having the ability to alter my appearance, it forced me, as well as Lizzie and Jordan and countless others, to embrace our differences and even have the privilege of inspiring others just by being ourselves! There is no question living in this camp is harder; it takes a lot of strength for sure. Although it admittedly took me years to get here, I am actually relieved I couldn’t fix my own physical difference.
To me, as I flaunt who I am and how I was naturally created (and teach my children to accept their lot in life with pride), I feel my inherent value more intently and beautifully than any benefit surgery could offer.