‘I spent years hiding my physical differences. That’s why I taught my sons to flaunt theirs,” says Meg Zucker.
Ectrodactyly, which is also known as split hand/foot malformation (SHFM), is a condition characterized by absence or malformation of one or more of the fingers or toes. Usually, the middle fingers or toes are affected.
Featured on US Today, she narrates;
”The first time I saw my husband, John, I was visiting his childhood home. His brother Mat, my friend, pointed at his picture and said, “That’s my brother, Johnny.” As I gazed at the photograph of the handsome young man, I felt relieved he couldn’t stare at me back.
I was born with a condition called ectrodactyly that left me with one finger on each hand, shortened forearms and one toe on each foot. Upon encountering me, many presume I have been condemned to a rather dire life-sentence. However, I was fortunate to have been raised by parents who treated me simply as if I was in my own version of normal, capable of doing everything within my means. The more they held back the more I became independent and thrived.
But despite having an innately positive and outgoing disposition, I abhorred whenever strangers invariably gawked. A typical day of constant stares would be topped off with yet another outburst of, “Mommy, did you see that girl…?” I grew increasingly frustrated.
Finding my needle in a haystack
Around five, I began to hide my hands in public all the time. It was undeniably a form of self-loathing. And so my life was the perfect paradox; I felt normal but was perceived as anything but.
John and I finally were introduced by our mutual friend Beth on Yom Kippur in Synagogue. John jokes now that while we were all atoning for our sins, he was taken with me and began dreaming up new ones.
Reflexively I shoved my hands deep into my pockets. But the conversation flowed so effortlessly that eventually I forgot to keep my hands hidden. The more he didn’t seem to care the more comfortable I became. Thankfully, I married a man not only willing to embrace me unconditionally but also excited to champion our three children, two of whom also inherited my condition.
Finding such a keeper is fortunate for anyone, but when you live your life so blatantly different, it’s like finding a needle in a haystack.
A world where people meet online
Since the pandemic, I’ve often been on virtual conference calls where only my face and shoulders are visible. It is no wonder memories of living as a hider have resurfaced.
It has also caused me to think about our sons, now in their late teens. As they explore dating, I suspect they will long for the option of ‘Get-to-know-me’ first and ‘Get-to know-about it’ second.
How wonderful would it be if the world were generously populated with self-identified demi-sexuals, those who are attracted to a person’s personality before their body? But we deal with the world we’re given, not the one we wish for. Nowadays, most people meet online and instantly judge one another hoping for a quick swipe right.
The irony doesn’t escape me that many people post unrealistic photos online of a time when they were younger, thinner or both and get to play ball when people like us never even get a chance to walk onto the field. The experience of constant rejection can seriously erode your self-worth.
You’re damned if you reveal yourself in the first instance and damned if you don’t and they discover it later. We feel utterly powerless. We are searching for someone but all the while needing reaffirmation we are even worthy.
Recently I put John on the spot: “If we had met online and you learned about my condition before our first actual date, would you have given me a chance?” His answer was rough to hear. “I guess not – but I had heard enough about you from Beth.”
Of course, not every person has the maturity, strength or spirit to choose a life tethered to someone that invites frequent unwelcome attention. Everyone deserves the possibility of love. But for people like us, finding the right match becomes an inherently more difficult experience, online or not. It’s the equivalent of being a potentially winning lottery ticket cloaked in an overlooked envelope.
However, my best-kept secret is that our difference is truly a gift. I wasted so many years hiding when in fact those willing to take the plunge would be the only people worthy of my affection anyway. I have come to realize that my needle in the haystack theory is upside down.
Flaunting your difference (my code for unconditional self-acceptance) becomes the most important barometer so that special people can show up.
Meg Zucker is a Managing Director at RBC Capital Markets and President and Founder of Don’t Hide It, Flaunt It, a 501(c)(3) non-profit whose mission is to encourage empathy and celebrate difference. Meg’s book, Born Extraordinary: Empowering Children with Differences and Disabilities will be published by Tarcher Perigee, an imprint of Penguin Random House, in March 2023.