Hi all! I am thrilled to have found this website. I never really researched my deformity nor have I really ever accepted it. I also have never met anyone with my deformity and it really was just out of the blue that I got on the computer and began to search for information about ABS. I am 22 years old and as others have written it is very easy to feel like an outsider, however, after finding this website, I finally have the courage to post my story and “come out” if you will, about my deformity (which as many of you probably know is a BIG deal!).
I was born in 1985. I am the oldest of three and I am the only child that was effected by ABS. I was also the only one born with Spinabifida. However, it has never been brought to my attention that the two had any relationship with one another.
By looking at me you would never assume that anything was “wrong” with me. The Spinabifida was taken care of at birth and I have had no problems or complications thus far. I guess I got lucky in a lot of ways. My right foot was the only part of my body that was affected by Amniotic Banding. I am missing my first toe and my second and third toe are bonded together. I live a very normal life and have had only minor complications due to ABS. When I was a child I had no problem walking, running, skipping. I participated in softball, ballet, tap, and jazz. I still have no problems in any of these areas. I do have to say that the entire right side of my body is more toned then my left, which is odd. I don’t think it is noticeable to anyone unless I were to point it out, but I do feel as if that my right side is compensating for the loss of the toes, for balance and what have you. My right calf is much more developed then my left and it is almost impossible for me to get my left calf more developed. However the physical complications were much less difficult to deal with then the mental.
I remember a very long time ago, and I don’t know if there is any truth to this but, I was watching Oprah and an expert on her show said that children that are missing limbs, digits etc. have naturally higher stress levels. Which to me makes perfect sense. Sometimes I wish that the banding hadn’t happened to my foot, where I can hide it from people. I wish that it was just my fingers or something this way people would just know and I wouldn’t feel like I was hiding something. When I was younger and even now at 22, I refuse to go to pool parties, the beach, unless I’m with people I feel totally comfortable with. I suppose my whole or most of my high school graduating class knew about my toes, but people never really bothered me about it. Its so stupid that I let it bother me so much, when I think about it I know if I were to tell someone I don’t think they would change their opinion of me and if they did then obviously they are very shallow, but I fear the rejection. Growing up I never really told anyone, and it wasn’t a problem hiding it. It wasn’t until I got older and had more of a social life.
My biggest obstacle is telling people, I don’t know how to go about it. I don’t just want to throw it out there randomly; I think that would be weird. This has only began to be a problem now, I recently ended a relationship with a “high school sweetheart” that lasted all through college, we even lived together for a year. Now that I am dating and I know the people I’m seeing don’t know about my deformity I feel like I’m not being true to myself and almost as if I am being deceitful. All and all I have a wonderful life, I’ve got great friends, I’ve had many boyfriends, and I’ve always been very active. If there was one thing I could change about all of this it would the feeling of shame that I feel whenever I want to tell someone about it. I am working on becoming more comfortable with my toes so that I am not always hiding them (I even started painting my toe nails!). Maybe one day I’ll even feel comfortable in open toed shoes! I hope that through this website and talking with other people with this condition I will accept who I am physically. Anyone please feel free to contact me, I think this is a great place for people like us to share our stories.
-Colleen
