“An ‘old soul’ is a person wise beyond their years; people of emotional stability that appear to have more understanding of the world around them, regardless of their age.”
I ran home as fast as I could. I could hardly wait to go to my room and take out the “Girls World Styling Head” my parents had bought me for Chanukah the prior month. I could work on her hair. I could try new ways to apply her make-up. If it were up to me, I would’ve attended to her for hours. Although I never intellectualized my thoughts in the moment, I was desperate to perfect my Styling Head and translate it onto my own face and head. If I could make my face and hair look absolutely gorgeous, maybe I could draw attention away from my extremely different-looking hands and feet.
Earlier this month a DHIFI Facebook follower and flaunter shared an article with me that I can’t forget. It was by a woman named Carly Findlay and called, “How To Defend Yourself When Your Photo Is Ridiculed on Reddit.” ( http://www.dailydot.com/lifestyle/carly-findlay-photo-reddit-ichthyosis/). Born with a condition called Ichthyosis, a rare skin disorder causing dry, often discolored scaly skin, Findlay maintains her own blog ( http://carlyfindlay.blogspot.com). Findlay describes unexpectedly coming across a photo of herself posted to Reddit titled, “WTF,” followed by many mean-spirited comments: “WTF is that? It looks like something that was partially digested by my dog,” and “Lobster!” and “She looks like a glazed donut.” There were many more.
I think the comment that caught my attention the most was, “Lobster,” which was less brutal than others but personal for me. If you look up ‘ectrodactyly,’ my condition, it will mention something like, “The hands and feet of people with ectrodactyly are often described as ‘claw-like.’ It is also known as lobster-claw syndrome.” Every time I read that, admittedly, it still stings a bit. Years ago I had read about and seen images of Grady Stiles, a man who was born with ectrodactyly who called himself “Lobster Boy.” He purposefully used his physical difference to join a Freak-Show carnival and toured with his two children who shared his condition as “The Lobster Family.” I am quite sure that we have Grady to thank for the continued association of our genetic condition with the term “lobster.”
Fortunately for Carly, in addition to the nasty comments she endured, there were many that offered their strong support. One of Carly’s favorites was: “There, but for the Grace of God, go I. Parents, teach your children not to laugh at people that aren’t what society deems as “perfect”. That’s my sermon for the day, keep your comments to yourself if you don’t agree with me. I don’t need any help, thanks though…..she has a smile that makes her look like Geena Davis.”
This prompted Carly to provide an amazing (flaunting) response: “After gaining confidence and support through years of blogging, I couldn’t care whether they call me lobster or silly putty…..When this picture was posted, I was content lying in the arms of my love, having just seen a band and eaten a great meal—a night filled with laughs.”
The same week I heard that the incredible flaunter, Sam Berns, who was born with an extremely rare condition called Progeria (which results in rapid aging and related physical complications), had died at the age of seventeen. In 2013 Sam was featured in an HBO documentary called, “Life According to Sam.” Only a few months ago he presented a TED talk to an extremely captive audience. http://radioboston.wbur.org/2014/01/17/remembering-sam-berns. Despite his physical difference and resulting challenges, Sam’s outlook on life was, in a word, phenomenal.
When I learned of Sam’s passing I felt really down….not that I knew him or anything like that. I just felt like his life was so impactful for so many. I stand amazed at people who are born with a facial physical difference that are able to cherish what they have, rather than focusing on what they don’t. Although I too have a physical difference, I could at least temporarily shove my hands in my pockets any time I didn’t feel like having a new kid stare at me. In fact, when I first watched Lobster Boy…I hid my hands for days in my pockets. I always regarded my face as my blessing simply because that part of me was considered ‘normal.’ People like Sam and Carly have never had a chance to hide their physical difference—-there is no escape. Yet, to me, they seem like old souls who acquired a bit more wisdom than the rest of us and who can experience life with a bit more honesty and a deeper level of joy.
On the award shows this past month I watched glamorous stars walk the red carpet in high fashion. I couldn’t help but think that they look amazing, but wondered how do they actually feel about themselves? So many people walk this earth unhappy with the way they look, never satisfied. But Sam Berns, in particular, showed us the reward for unconditional self-love. He summed it up best when interviewed on NPR last year. There he was asked what people should most remember about him. He responded without missing a beat. “I have had a very happy life.” If I could talk to Sam, I would let him know that although he was clearly taken too soon from his parents, family and friends, I love knowing that in his brief time on earth, in my opinion I am grateful knowing that in just a short amount of time, Sam achieved what we are all seeking anyway.