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
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