Michelle

I was born on September 11, 1956 in Fort Worth TX.    I don’t know a lot of history surrounding my birth and when or if my mother was given the Moebius Syndrome diagnosis.  I do know I had to stay in the hospital a couple of weeks because I was apparently unable to suck a bottle.  I guess I eventually got the hang of it.  I think I had club feet because my mom used to talk about when I had casts on my feet.  Also I had some baby shoes with a steel bar between them I guess to try to straighten out my feet.  As a child I had to wear clunky shoes instead of loafers or any kind of stylish shoes.  I still have problems with my feet being wide and it’s hard for me to find shoes which fit.  


It seems I had a pretty normal childhood.  I was an only child so I was always lonely at home for someone to play with.  I went all through school with a lot of the same kids so I think it helped keep the teasing down although there was still some of course.  

When I became interested in boys of course they weren’t interested in me.  Dating was a harder athing of course because of the Moebius.  I really didn’t date anyone until after high school.

I have always managed to have a social and romantic life although I know it would have been a lot easier without Moebius!  There are people who will accept us Moebius people as romantic partners… they’re just little harder to find!  No one should give up any of their dreams…be it career or personal!  I should have done more in regards to a career but I have been married and have kids and grandkids!  I am also dating a guy now who is blind.  Maybe I should have been dating blind guys all along because he doesn’t care what I look like… haha!

I don’t remember when I first heard the term of Moebius Syndrome.  I think it was around 7th grade or so.  None of the doctors seemed to know much about it.  The last time I went to a doctor about it was right after I got married in 1988.  He said there wasn’t much could be done about it.  He seemed really surprised I was married!  He told me to go home and live my life so I did!  My ex husband and I were together for 22 years and we never discussed it nor did any of my friends and I discuss it.  I was just me and they accepted me for me!

In the summer of 2008 I decided to look online one day and found all of these other people similar to myself who had Moebius Syndrome!  I was excited to find there are people out there similar to me!  I had never met anyone else with it!  I met some people here locally.   I finally felt like I belonged!  In 2010 I went to my first Moebius Syndrome Conference in Colorado and it was a wonderful experience!  I’ve also been to 2 more…..2014 in Washington DC and 2016 in Long Beach CA.  I plan to continue to go as long as I am able!

I’ve met so many wonderful people and look forward to meeting many more!

If I could tell my younger self something it would be…..Go for it!  We with Moebius can do most anything anyone else can do except smile and we smile with our Hearts!

*****

2009

My name is Michele. I am a 52 year old female with, I guess what is called bi lateral Moebius Syndrome, since it is mainly on one side. I was born on September 11, 1956 in Ft. Worth, TX where I have lived my entire life. I think I had a problem sucking on a bottle because it seems like I was told I spent a couple of weeks in the hospital after I was born because of this. I guess I caught on because I know I drank from bottles. Also, I think I also had clubbed feet because I had an apparatus which I wore for a time. It was a steel bar connected to my shoes. I guess it straightened out my feet, although I’m not sure how long I wore it. I know my mother took me to doctors when I was a young child but when I was growing up, we never spoke of my having this condition. I’m not even sure when I first heard the term “Mobius Syndrome.” I had a fairly normal childhood, although I always knew I was “different.” I don’t remember a lot of teasing in school, although there was some, especially when new kids would enter the picture. I went to the same school system so a lot of the kids were “used” to me so It’s just when I went to junior high & high school where there were new kids, I would have to endure teasing until they got “used” to me, too. I’m sure there was probably more than I even remember, but sometimes your brain chooses not to remember the bad stuff. If people took the time to get to know me they could look beyond the Mobius Syndrome but as we with Mobius Syndrome know, there are some people who don’t bother to look beyond it & just assume we are retarded or something. I do have a lot of friends I have known for years (many since childhood) so I know there are a lot of people who will look beyond it.

Updated 1/20/2011

Since I have first come in contact with others with Moebius Syndrome in the summer of 2008, it has really been a great experience ! Up until that time, I had never met anyone else with Moebius & had no idea there were others out there. I loved going to the 9th Moebius Syndrome Conference in Colorado last summer. That was such a wonderful Experience! Everyone should try to go if at all possible. It’s so great to meet others such myself. There are actually more people with Moebius than I ever believed–I always thought I was the only one !! I wish there had of been all this information out there when I was growing up. I know there is really still not that much knowledge out there about Moebius but just to know you are not alone is worth so much. I have gotten a lot of positive support from people & I’m very grateful for that !! If I could say something to a young person with Moebius it would be not to let it hold them back. If they have dreams & goals, they must try to achieve them & not let Moebius get in the way. I always felt unsure of myself & didn’t go outside of my comfort zone but now I realize I could have achieved so much more if I would have set my mind to it & had the right attitude. I am so excited about January 24th –Our First Annual Moebius Syndrome Awareness Day!! The more people become aware of Moebius Syndrome the better!! I, for one, plan on wearing purple & making people aware of Moebius Syndrome, not only on January 24th, but everyday of the year!!

Author: Tim Smith

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