My name is Ellie, I’m 16 years old and I was born with a craniofacial syndrome called Pfeiffer Syndrome. Because of this, I’ve had multiple surgeries on my skull and face, I had a trach for 6 years and I’ve worn a hearing-aid my entire life.
At exactly one week old, I had my first surgery to remove the back half of my skull to give my brain room to grow. I’ve had lots of surgeries since then, and I’ll have a few more before I’m done. That’s not what’s interesting, though.
All my life, people have told me I’m brave, I’m strong, I’m tough and so on. They tell me they’re sorry and they wonder about the “maturity” of others with medical conditions.
But, I’m not sorry. I love my life, medical condition or not, and I don’t like being called brave. I get scared every time I walk into a hospital and I have panic attacks before a surgery. It’s not bravery, it’s life.
Pfeiffer Syndrome isn’t a “condition.” It’s a reality, and those of us with medical conditions know and realize more than people think we do. We may not know everything, but we do know our reality.
At Christmas, I played harp for a concert. Afterwards, a lady (let’s call her Sue) came up and told me that she was glad that I look different. Sue told me how she had had a childhood friend with a facial abnormality and how that friend never put herself out there and always let her face come before her life. But there I was, playing harp like the world didn’t exist. She thanked me for playing harp and for looking different.
I can’t put into words how amazed I was. People always dodge the fact that I do look different. I’ve brought it up before, just to test the waters, and the topic gets shot down pretty quickly. Sue, coming up and thanking me for being me, was beyond amazing and heartwarming and I cherish that memory.
I would rather live a life with hospitals and doctors, funny glances and skirted conversations, playing harp and connecting with people like Sue, than without. I define my experience as life. Because in the end, that’s all it is: Ellie’s awesome life. 🙂