Location: Long Island, NY
Challenge: Duchenne Muscular Dystrophy
Brandon Myers is a music education student at Five Towns College in New York.
Brandon says "As early as Pre-K my teachers began to notice that I was different from the other children. My instructor, Mrs. Cassolini, told my parents that my gait was off from the other children’s. When I playing at recess one day, she noticed that I was having trouble keeping up with the other children. I couldn’t walk or run at the same pace as the other kids. She advised my parents to take me to a neurologist right away. A few months later, after extensive blood tests I was diagnosed with Duchene Muscular Dystrophy."
Duchene Muscular Dystrophy is categorized as a progressive disorder caused by a lack of an essential muscle building protein known as dystrophin. Without this important building block the muscle fibers in the body begin to atrophy and weaken over time.
He adds "Due to the effects of DMD I began walking on my toes and falling a lot. Right when I started Middle School at age 11 I started to use a wheelchair full time. Unfortunately, most other kids were less than accepting and I endured several years of verbal and cyber bullying and social isolation. I even spent some time being home schooled because of what I was dealing with. Music quite possibly was my only saving grace."
For as long as Brandon can remember music has been an important part of his life. He says "In one of the first memories that I can recall my sister and I were dancing to Ray Charles, laughing, and having fun while my. Look no further than my immediate relatives and it starts to become apparent how deeply the arts are rooted in my family tree." Brandon's cousin is a cellist, his great grandfather was a pianist and accordion player, his grandfather was and his sister is an actor/actress, and his grandmothers were both dancers in their younger days. But, Brandon adds "my father was and still is one of my earliest influences. He has been a professional drummer and singer for over 30 years and has his own band called Body Heat, which plays weddings and corporate events. Watching him play with his band and create such happy feelings in the audiences propelled me to take up the drums myself to follow in his footsteps."
Mrs. Russell, Brandon's elementary school chorus teacher only served to strengthen his passion for music. He adds "I had never met anyone with as much enthusiasm about a subject as she had for music education. There was such an aura of joy around her that you couldn’t help being drawn into it. She nurtured my growing love of music by taking me under her wing. She felt I had a real talent for singing and began giving me solos at all the school concerts. She urged me to take part in NYSSMA for the first time in my life, and she coached me and made me feel comfortable in my own skin. I did so well that she was able to recommend me for All County Mixed Youth Vocal Ensemble, which I participated in the next year. My interests started to turn more toward music after those experiences."
After a few years Brandon lost the dexterity to be able to play the drums effectively. His body was changing. He says "The most visible signs were that I began walking on my toes." This is the body’s way of compensating for increased weakness in the Achilles tendons, which normally keep feet flat on the ground.
Brandon says "This in turn caused me to have a harder time balancing and I would sometimes fall. However, I didn’t want to give up the experience of playing an instrument, so I switched to piano. Fortunately, my percussion studies gave me a great rhythmic foundation and I was able to pick up the piano faster than an average person with no prior musical experience."
In Junior High and High School Brandon continued to take part in the school music program taking part in a wide variety of vocal and band ensembles. He says "I participated once again in the All County Chorus this time in the teenage division. I also joined the MENC’s (Music Educator’s National Conference) Tri-M Music Honors Society participating in event such as adding background music to school dances, performing at local nursing homes, and many other school events." Through all this community service and music activities Brandon decided he wanted to become a Music Teacher and spread his love of music to others.
He adds "By now you may be wondering to yourself how I will conduct my future students and teach instruments to children without being able to move my limbs in the same way as they can. These two issues caused me a lot of worry and frustration. At one point I was actually advised to switch my major and I gave it some serious thought but I wasn’t about to give up on my dreams so easily." Brandon began to research and investigate what is out there as far as adaptive musical equipment and what other people did. Ultimately the answer came in the form of a man named Brian Schwenzfeier.
Brandon's advisor stumbled across an article about him on the Muscular Dystrophy Association website. Brian has already accomplished what Brandon was looking to achieve he earned his music teaching degree.
Brandon reached out to St. Rose College in search of anyone who could explain how he accomplished this. He spoke to his former Professor and current Music Division chair Dr. Hansborough. He explained to Brandon that he and Brian worked extensively in private to properly assess his difficulties and modify the curriculum fairly. He proceeded to put Brandon in touch with Brian via e-mail and he was happy to speak with him. In one response he said, "my advice would be that you need to be a very strong self advocate. In each class you will have to figure out, in your own way, how to achieve the same, or as close to, the same goals as everyone else. I found that as long as you make it very clear that you know the material and that you're putting in an extreme amount of effort than the teachers will respect you and grade you accordingly."
Brandon has taken his suggestion and after meeting with some Five Towns and explaining the precedent that he set they agreed to work around Brandon's limitations.
Brandon says "One of the teacher assistants sized up my situation in my conducting course last semester and we devised a system of head movements to convey what I wanted to a performing group. I’m taking an instrumental methods course right now at my college. Since there is no way for me to physically play the instruments I’m playing along on the piano in different keys depending how each is tuned and learning to explain where to place your fingers on the real instrument. The fact is there really is no clear-cut answer. There isn’t a one-size fits all approach everyone in my situation or any handicap for that matter is different. We are taking it a day at a time and will continue to come up with solutions along the way."
Music is not just about family tradition or amusement to Brandon. It is therapeutic and is his form of coping. He adds "There many times in life especially in my teenage years that I went through hard times due to my disorder both medically and socially. I had no confidence and felt very alone. There were many times I wanted to give up. However, when I sang or touched the piano the world went away for a while and I disappeared into the music. Music has always given me an escape from my problems and may have very well saved my life in various instances. This very reason is why I want to teach music to children and teens. I want to give them an outlet and a place to go when they feel lost and use my bad experiences to better their lives and let them know there is hope and life can get better. If I even change a few lives then all I have endured will not be in vain."
One of Brandon's favorite songs is called "I've Got To Be Me" made famous by crooner Sammy Davis Jr. Brandon says "I feel like it’s my theme song for the reason that it speaks about being true to your self no matter what challenges and obstacles that you may face on the path of life. I don’t know what I would have done without the art of song. Music has the power to help people cope with everyday life. It brings us closer to one another and brings joy to the masses no matter what our background is." As the American writer Henry Wadsworth Longfellow once said, "music is the universal language of mankind".