1. Q / You have a fraternal twin brother. What are the advantages/disadvantages of having a twin who doesn’t have Moebius Syndrome?
A / There are subtle advantages as well as disadvantages to having a brother without MS. The main disadvantage is that I am always confronted with a realistic portrayal of what my life COULD be like if I didn’t have MS. My brother is very fixated on girls and pursuing romantic relationships. I cannot help but possess some envy towards him because girls find him attractive. I have never been flirted with or had a guy like me for more than a friend. I have accepted the fact (for right now at least) that guys won’t pursue me unless they want sex. In other ways having a twin without MS reveals how possessing a disability of any nature may influence your personality in a positive manner. My brother is cynical, judgmental and intense. I on the other hand am layed back, happy go lucky, easy natured and gentle. I believe our personality is influenced by our environment to a certain extent. I have learned life is not fair since day one. I have learned you have to be willing to put your heart, blood and soul into something if you ever want to prevail. I have learned these life lessons because as a child I always had to endeavor in order to obtain something I desired. As a child my speech was poorly articulated as I couldn’t pronounce letters such as "M". Making friends was difficult because at times kids couldn’t understand what I was struggling to say. I eventually made friends with both determination and effort. My brother on the other hand has literally never had to try hard at anything in his eighteen years of life be it soccer, school or friends. My brother is a very multi faceted individual but, because he has never been forced to put forth effort he ultimately doesn’t understand the concept of 100% effort. I can personally say I know what it’s like to give 100%. Ultimately having a twin without MS has it’s drawbacks as well as advantages.
2. Q / Tell us about yourself:
A / My hobbies include school, friends, family, music and swimming. I am an anomaly for my generation in that I look forward to school each day. When I am at school it allows me to excel and all my problems diminish. Many teens can brag to their friends about their various athletic accomplishments but, I choose to converse with my friends about ongoing matters in school such as tests and volatile teachers. I don’t have any extra curricular activities which boost my ego or make me feel superior compared to others; except school. This is the one place where I shine. I may not be the world’s best swimmer or track star but, I can kick your ass at school with my sublime intelligence! Other hobbies of mine include hanging out with friends. One advantage of having an aberrant facial expression is that I know my friends like me for the person I truly am. Many teenagers have a hodge-podge variety of friends but, when they are faced with a dilemma of some kind or another, their posy of friends never seizes to diminish. I don’t have to worry about my friends exchanging vulgar statements about me behind my back. I love hip-hop/pop music and also some rock as well. Recently I have found myself listening to Christian music which I find very soothing. I enjoy laying low and having a good time with a small group of close friends. I absolutely LOVE to go shopping. The one sport I enjoy participating in is swimming. I enjoy swimming because it’s a sport you can perform by yourself so in essence you’re competing with yourself. I am not a competitive person which makes swimming the perfect sport for me! In many ways I am your average ten however, I possess peculiar areas of interest such as Neurology and Biology. I also am interested in axon regeneration. You don’t know how many times I’ve goggled Micro vascular anastomosis into google! I am also interested in genetics and medicine. I love watching the discovery health channel in addition to the science channel. I enjoy reading medical journals and especially Scientific American Mind magazines. My all time favorite activity as pathetic as it sounds is eating. I eat EVERYTHING! What can I say I have a glutinous obsession for food!
3. Q / What did you think of the very first Moebius Syndrome Awareness Day? If you could name some activities you’d like to see for MSAD 2012, what would they be?
A / I personally thought the very first MSAD was a great success but, there is always room for improvement. My personal experience with MSAD has been very enlightening and has brought forth new revelations for me. At first I was apprehensive about sighing up on the MSAD page on FB because I was afraid my friends at school would see I had signed up on my recent activity. The more I thought about the situation I came to my own revelation that everyone could just go_______ off because I didn’t care if people knew I had MS. I knew dedicated individuals such as Tim Smith were endeavoring to put themselves out there and expose the disease to the community at their own expense so with this in mind I began inviting all my friends on FB to the cause. At first I was very meticulous about whom I invited to the cause. When Tim announced we needed 500 more people to enter the cause in order for their to be 4000 members before Christmas that’s when I put my fears aside and literally invited ALL my friends. I invited people who didn’t even know I had MS but, they knew their was an anomaly about me. I knew they would associate my aberrant facial expression with the description of Mobius syndrome on the cause page but, I had reached a new level of maturity in that I didn’t care if they knew I had the disability. For instance my sophomore Biology teacher Darvin Dechaser who is now a supporter of the cause took me aside my sophomore year and told me I had a syndrome called Turners. This is a disorder caused by a chromosomal abnormality which results in one X chromosome. The resulting effects are a strikingly young looking appearance, extra skin around the neck, excessively short stature, short fingers and toes and even irregular rotation of the wrist or elbows. When Mr.DeChaser took me aside and informed me I had this disorder I knew he had mistaken some of the features which accompany MS for those of Turners. I was too embarrassed to correct him on his inaccurate diagnosis. It was awkward enough having a science teacher approach me and suggest I have a rare mutation. Now, two years later invited him to the MSAD cause on FB. I’m confident he realizes I have MS and not Turners. This gesture leads me to believe I have become more open to disclosing my Mobius to those around me from when I was a sophomore. Basically, if MSAD inspired me to emerge out of my introverted shell and notify those around me than think about the endless possibilities this holiday could generate! Personally I would like to see more news coverage on major news station such as CNN. I heard a variety of festivities were occurring in the UK but, I didn’t hear of any activities occurring in California whatsoever. I think we should integrate technology into the celebration of MSAD. Maybe we could design e-cards or make bumper stickers. There are plenty of subtle tactics we could employ to capture the public’s eye.
4. Q / .What are your goals for the future, do they include Moebius Syndrome?
A / .As of right now I have a variety of goals which I hope I will eventually accomplish in the future. Many of these goals will take a significant amount of time to complete but, I am up for the challenge. The goal which resides at the top of my list is obtaining my BA but before I achieve this feat I need to figure out my desired occupation. This is the one goal which is currently consuming a majority of my time. I am interested in a variety of different occupations but, I can only choose one! The occupations I want to pursue are all related because they all possess an aspect of medicine. I at one time wanted to be a Neurologist now I am leaning towards the prospect of being a medical examiner.
5. Q / Give some tips on how to cope with bullies/bullying?
A / Bullying from peers ma have detrimental impact on a Childs self esteem. The primary reason being children haven’t grasped the concept of using their logic to verify an accusation. For example say little Johnny is sitting at his desk minding his own business and then some punk walks over and says "Your face is defunct why don’t you go join the circus because that’s where you belong!" Little Johnny’s logic hasn’t developed to the point in which he could use his common sense to verify the accusation. Let’s apply this scenario to an older adolescent around the age of twelve. Cindy is sitting on the bus when some kid turns around to her and says "Hey poker face show some expression." Cindy retaliates by saying: You guys are right I do have a poker face! Thank you very much for your hospitality to comment on my appearance!" The point is teasing may be detrimental at a young age but, when the victim of the bullying matures enough to the point they can rationalize the statement it is no longer detrimental. My following pieces of advice are mainly geared toward children. These coping strategies have a higher chance of being effective if they are employed by the parent at home such as role playing.
6. Q / Society is fixated on appearance. How do you want others to see you?
A / I want society to see me as an independent, educated and self sufficient woman.
7. Q / How have you overcome the physical challenges of Moebius Syndrome?
A / I’ve overcome my obstacles through my endeavors to be the same as my peers. I didn’t want to be the odd man out when it came to participating in athletic activities. Even though I had weak muscles and depth perception problems I still participated in these activities. I have also overcome physical obstacles by receiving the gracillas muscle transplant which allowed me to smile. Another major accomplishment was developing the ability to move my eyes from side to side. As a baby I could only move my eyes laterally but, as I got older somehow I obtained the ability to move my eyes from side to side.
8. Q / You’re preparing to go out on a date with Mr. Right. Name the most important characteristics a guy should see in a girl, (besides appearance)?
A / A guy should look for a girl who respects herself because if the woman doesn’t respect herself the guy never will. Communication in my opinion is the most fundamental aspect of a relationship. Guy’s should seek girls who listen to their problems and aren’t only concerned about their own problems. Guy’s should look for a girl who will remain loyal and if there should be a problem the girl should communicate with her partner instead of just disregarding the problem and venturing off with another man at her partner’s expense. At least have the decency to let your partner fix the problem that’s constraining the relationship before you abandon ship!
9.Q / In what areas could the medical community improve in dealing with those who have Moebius Syndrome?
A / The medical community needs to be aware of the medical problems which accompany MS. Many children have pulmonary problems and foot deformities involving muscle tone. Physicians need to be aware of these symptoms because many of the commonly associated symptoms of MS are derived from the root cause of MS-which is primarily neurological. In addition to MS I have been diagnosed with ADD. I was given a prescription for Aderall(Amphetamine salts). ADD is neurological as well so I have been meaning to ask my physician if the aderall I have been prescribed is actually helping my ADD because the symptoms I am experiencing could be related to an abnormal neurological mechanism which meds cannot fix. Also, depression pardons virtually all disabilities. Physicians should be examining their clients for depression just to insure if they do exhibit any symptoms they will receive immediate help.
10.Q / Imagine that you are a scientist. What aspects of Moebius Syndrome would you study and why?
A / I would utilize a two pronged approached to study the disorder. I would study the embryonic origin, regeneration and genetics. I study these three domains because they all complement each other in the sense they are pertinent to the development of MS.