LISA: MOEBIUS ADULT

     My name is Lisa Erickson. I am 24 and live in Texas. I have just recently finished college, so I am not sure how Moebius will affect my next stage in life. I can, however, tell you a bit of my childhood story.

     First of all, I would like to thank all of you who have previously participated in this website and the others who have worked to give this condition more awareness. I have only recently discovered that there were websites, support groups, conventions and foundations for Moebius Syndrome. I have not even really been involved in anything, yet I can not tell you the impact it has already had on my life. I finally have a sense of validation for all the feelings and emotions that my family and I have been through the past 24 years.

     I was diagnosed soon after birth with Moebius. I went through years of speech and physical therapy. I was born with club feet and crossed eyes as well as the facial paralysis. When I was younger I had surgeries to correct the feet and eyes and while in high school, I had another couple surgeries to correct my strabismus. Those helped a great deal, but my eyes still have very little movement and still look somewhat crossed. My body is also pretty weak and my knees have a tendency to give me problems.

     I will not kid you,..... my childhood could have been better. There was some pretty bad teasing and kids picking on me just for their kicks. I did have friends though. Kids can be mean, but some can be incredibly compassionate. Most of my childhood friends could have cared less that I couldn't smile. I was treated no differently. My closest childhood friend, Deena, called me Lisa "Ha-Ha" Erickson because I was always laughing. I was of course shy and did much better with just one or two friends at a time. In larger groups, especially in elementary school, I tended to try too hard which annoyed the others, and usually left me alone. To this day, I am not comfortable meeting new people. I hope someday I can overcome that.

     My family had its own problems, as all families do. I am an only child. My parents had one child five years before me, who died before turning one because of heart complications. As far as my parents dealing with my Moebius, they did what they thought was best. They instilled in me that I was normal and could do anything others could. My mother was more sympathetic to me than my father. I think he simply couldn't deal with it. I don't think he ever bargained for getting a kid that was different. My relationship with my dad has not ever been strong, though I think we are making tiny baby steps forward as I get older.

     My mother was devoted to me as a child. She was constantly hauling me to therapy and other classes or lessons that kids take. She always listened to me and always loved me. If I have any advice for parents, it would be to treat your kid's Moebius with a happy medium of normalcy and extra special care. I would not ignore it, but would also try not to dwell on it too much. Their emotions are real.

     I think kids growing up with Moebius now are at such an advantage. When I was in high school, I wondered if I would feel better about myself if I had a more common birth defect or at least one that others could easily recognize. There is so much more for kids with Moebius, as well as parents, to have opportunities to speak with others. I would also tell kids to study hard. I know that is stereotypical advice given to kids, but you will most likely have to prove yourself more than the other people around you. Unfortunately, people often judge others by looks. That is just life and we have to deal with it.

     I recently got my degree in Communications. It was a great subject to learn about. I took a lot of interesting classes, but I find myself very discouraged and frankly very scared of finding a job in this market. If I was starting college over, I think I would stick to a more traditional field like education or medicine. I hate to say this because I believe you can do anything if you put your mind to it, but a career in something more conventional might be simpler.

     I would love to talk with any of you. Please feel free to email me. I by no means have any special answers, but hopefully we can gain strength and help each other.

Take care.
Lisa_k_e@yahoo.com