A Butterfly Trapped in the Diving Bell
“One day when you wake up, you find your fingers not moving as freely as they did yesterday. Day after day, you are losing control over the other parts of your body – wrists, knees, torso, and neck – as if they don’t belong to you anymore. Then, you need to be helped with your daily life. You can’t walk. You can’t talk. Eventually, the only part of you that moves is your eyes. Still, your thought is clear, and your senses are keen. It feels as if your soul is trapped, unmovable, in a familiar but strange prison. And it gets worse every day and can’t be stopped till the end of your life.”
On May 3, 2015, in a volunteer service organized by SCU’s Health and Counseling Center, Taiwan Motor Neuron Disease Association (MNDA) and Zhongxiao Branch of Taipei City Hospital, 42 SCU teachers and students visited the Hospital’s MND/ALS Unit, and played music for MND/ALS patients, people who suffered from motor neuron disease or amyotrophic lateral sclerosis.
Change the Way of Living and Never Give Up
One of the volunteers in MNDA shared the case of his own son, who “was diagnosed with MND/ALS at the prime of his career when one day he found he couldn’t move his left hand. Afterwards he quit his job in Shanghai and traveled around the world with his wife while he could still move.” His effort to accept and adapt to the reality was impressive but his story and situation were also sad. The volunteers thanked Professor Guang-Lin Peng of the Department of Music for bringing his students to the wards, who would play music for th MND/ALS patients on the eve of Mother’s Day every year. In the past five years, students participating in the event have witnessed not just how the disease gradually deprives the patients of their living ability but also how the patients never give up or even change the way of living by using eyes – the only movable part of their body – to write down one after another piece of writing that pump themselves up and inspire others.
Thankful Music for Mothers
The volunteer event featured not only the students’ care to the MND/ALS patients but also their music that gave thanks to their mothers as an early celebration of Mother’s Day. Professor Guang-Lin Peng and some M.A. students of Soochow’s Department of Music presented Mothers’ March of Russian pianist Sergei Rachmaninoff and an adapted suite for The Nutcracker of Pyotr Tchaikovsky played by a clarinet trio. The great classical music was followed by an a cappella performance of a vocal band formed by SCU students. So soothing were Professor Peng’s violin solo and the student vocal band’s singing of The Moon Represents My Heart that all the audience were touched by the wonderful music. Although many of the patients have lost their ability to speak, their strong will and vitality are truly admirable, while student volunteers showed their love and care and learned to cherish what they have and to make every day of their life worth it.
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