Moebius Syndrome: Since childhood through adulthood, I’ve frequently been asked one question more than others: “Why do you talk funny?” This question was usually asked by children, or people who do not understand anything about facial paralysis. I used to take the question personally. It made me feel uncomfortable and different. I just wanted to be normal. As I grew older, I learned that there is really no such thing as “normal”. We are all unique people with equally individual struggles.
I was raised in a stable and happy middle class family environment. My father, a psychiatrist, and mother, after giving birth to me, realized very early that something was wrong. They helped me through the usual Moebius problems; suckling, crawling, walking, learning to ride a bike, swimming, etc. I struggled with speech and being understood. Throughout my childhood, I avoided my disability rather than embrace it. I learned there were certain activities I’d never be able to do well, like surfing or roller blading. I never considered myself an athlete. I spent several years partaking in physical therapy, to try to strengthen my core muscles as well as receive counsel from therapists and other professionals who understood me and my disability.
My biggest symptoms (as a result of the Moebius and aside from the standard partial facial paralysis) include almost complete deafness in my right ear, muscle weakness, lack of balance, depth perception problems and vision issues. My parents believe that I have overcome much of these issues and have learned to “compensate” well and function fully as my own person. Surgery to repair the facial paralysis was an option with only a 50% chance of success. I didn’t want to risk it, because the doctor said the operation would either be fully successful and I would have a full smile, or the operation would fail and I would have no use of my facial muscles at all. I often wondered if my life would have been different had I opted for the surgery. Today, I accept the fact that it is okay I didn’t go through with it and that I ended up taking a different path.
Once I embraced myself as I am, I realized how successful I could be. Music is my passion. It is my strongest source of comfort, inspiration, socialization and intellectual performance. My family members are all musicians and from an early age, I inherited their talents. Throughout my career I learned the basics for 15 musical instruments, the main focus being piano, voice, guitar and percussion. In spite of my deafness, I developed a skill called perfect pitch, which allows me to “call up” a random note at will, without any other reference point. These skills were noticed at an early age and since then I have developed them and performed to the best of my ability. I have had a rich education musically. I have studied under numerous music instructors and to this day, I play piano and sing regularly. I performed with the top band and choir at Cherry Creek High School in Denver for three years, and I received a Bachelor of Music Education degree from the University of Northern Colorado in 2009. I performed a pre-graduation Senior Recital for my piano faculty and also performed regularly with the top choir of the University. Performing is fun for me, because it helps me to forget that I’m different, allows me to feel relaxed and enjoy myself while playing and also give others the satisfaction of hearing my music.
I’ve been lucky to perform so many large pieces in the ensembles I worked with. A few of the bigger pieces I performed were symphonies by Beethoven, Negro Spirituals and many other notable pieces, both classical, patriotic or eclectic. I’ve satisfied my curiosity as a world traveler as well, being given several opportunities to travel abroad with the groups I performed with, both to England, Wales and New York. Privately, I’ve also performed many classical works by such composers as Beethoven, Chopin, Debussy, Bach and Rachmaninoff. Each time I pursue a new piece for piano or voice I raise the bar for myself and push myself to hone my skills further and be the best musician I can be.
To everyone with this disability, know that we are as unique as any other person. Be positive, achieve your goals and chase your dreams as I have. Today I strive to constantly be a better person. I no longer hide from my disability; I embrace the fact that I have overcome much and that there are others like me who have passions that far outweigh the struggles.