Hi everyone, my name is Elin. I’m 32 years old and have no idea how to fit those 32 years into two or three paragraphs, but I’ll give it a shot. I was diagnosed with Moebius Syndrome within the first week or so of my life. From what I can determine, I am somewhere in the middle in terms of the severity of my symptoms: the main effects for me are my inability to make facial expressions, my speech impediment, low muscle tone, as well as a left heel that won’t bend due to the aftermath of several surgeries to correct the club foot I was born with. I was a cute baby, though. I look at my baby and toddler pictures now and I feel love & compassion for that little girl that used to be me. Compassion, not self-pity. That hasn’t always been the case, and I think it’s important.
When I was growing up, sometimes it seemed to me that every time I turned around, something new was wrong with me. It must have felt that way to my family, too, but they were (and are!) wonderful. I just wanted to feel normal. Now that I’m older, I’m not sure anyone really feels “normal,” whatever that means. Junior high was hard. I started listening to music---I loved it loud and dark, which did not help with my hearing loss, but it did help me feel less alone. It’s a funny paradox that a song full of despair can bring hope to someone.
Today I am a graduate student and currently looking for part time work. Job hunting is not my favorite thing. It’s frustrating to look at the Help Wanted ads and wonder if I should even bother to apply for any job that mentions phone work (which is most of them). The point I want to make for any of the younger people coming to the conference who are having trouble is this: things do get better. Yes, they do. Sometimes you have to work at it a little bit harder than what seems fair, but things do change. I like myself today. I think I’m smart; I’m even kind of pretty. Today I have good friends and even the occasional date---another nice perk that I used to think only happened to other people. And: I have nieces! Two nieces, and twin nephews on the way (they may have arrived by the time you read this). This picture is me and my big sister’s daughter, Casey. I knew I would like being an aunt, but I did not know that I would love it. That’s life: You just never know what’s going to happen next.
