By Crystal Mata
Crystal Mata is currently studying Music Business and Drama at Houston Community College. She has her Bachelor’s Degree in Professional Music from Berklee College of Music. Crystal is affected by Hypohydrotic Ectodermal Dysplasia. She has been an active member of National Foundation for Ectodermal Dysplasias (NFED) for the past 14 years. She lives in Houston, Texas, where she both performs and teaches music.
When I was asked to write this blog, I jumped out of my seat in excitement. It’s such a privilege to share even a piece of my experience with so many others. I am affected by ectodermal dysplasia. I don’t sweat, I have lots of dental problems and jaw issues, and I also have thick fingernails. My hair is short and sparse and I have limited hearing loss.
It soon dawned on me, though, that I had no idea where to start. Who better to ask than my family – the people that have stood by my side as I live with my chronic condition?
So, as we drove to dinner one Friday night, I pushed record on my tape recorder and asked one simple question:
How has ectodermal dysplasia affected your life?
“I don’t think that ectodermal dysplasia ruled our lives. We ruled it.” This being one of the most profound things I’ve ever heard my mom say. Growing up wasn’t easy and during those hard times mama bear was always there for her baby cub. “I don’t think we treated you any differently and I don’t think that we raised you any differently than Angelica and Matthew,” she says.
My siblings were affected by my condition a lot more than most people would think. They were often the ones hugging me or defending me in front of strangers and bullies. “I didn’t have to go through what you went through,” says Matthew. My brother is still always good at turning my frowns into smiles. Unable to say much of anything else, my father responded, “It’s made you more sensitive to other people who are different.” Matthew agreed: “What he said.” Even at 23, he is a man of very few words.
My father sat in the front seat thinking hard about what to say next. When he finally started talking he didn’t stop for the next 7 minutes. “My goal was to make sure you knew you can still do anything you want. There is nothing holding you back from being the person you want to be. People are gonna make fun of you no matter what’s different. I wanted you to be strong enough to handle criticism.” But it wasn’t until he said, “Not everybody is given something like that [ectodermal dysplasia] and can handle it,” that he reminded me of the very first moment I came to accept who I am and how ectodermal dysplasia was just a part of me. It sounds nerdy, but I was reading ‘Spiderman’ and stumbled across this line, “With great power, comes great responsibility. This is my gift, my curse.” And just like that, it made all the sense in the world. It is my gift and my curse. Suddenly I was a superhero. And who doesn’t want to be a superhero?
“We wanted to be in control. We didn’t want it to control our lives.” When mom finished giving her two cents I reached around to give her a hug. Remembering the hardest moments of my childhood reminded me why I can handle the hardest moments of adulthood. Believing, being strong and aware, those are all our gifts and curses. And having a genetic mutation—that, my friends, is where our super power lies – in the deepest places in our souls, the darkest places of our minds and in the brightest places of our hearts.