A Deaf Bucket List
by Em. Begly
As a mother to special needs kids, including a daughter who is going both Deaf and Blind, this story touched my heart. Kristen D’angelo is a singer and percussionist. Soon however, that could all change. Kristen has a rare genetic disorder called Neurofibromatosis Type 2 which causes the body’s cells to grow out of check and form tumors, especially in the brain and vestibular and auditory nerve areas.
Currently, Kristen has a brain tumor causing daily seizures, 50 tumors along her spine causing chronic pain, and a tumor on her ring finger that makes it difficult to play her instrument. Most devastating for her, she has tumors wrapping her auditory nerve and one on each of her vocal cords. Her left cord is already paralyzed. If she loses her right cord as well, she will lose the ability to speak or sing and will need a tracheotomy to even breathe. She is undergoing chemo to shrink and manage the tumors as much as possible.
For many, this would be enough to make them quit. Not Kristen. The first thing she did was give human names to all her tumors. After that, she and her mom created a list of things she wants to hear before she becomes Deaf. A Deaf bucket list they called it. She has already done many of them including Ani DiFranco, Savage Garden, Bare Naked Ladies, Pearl Jam and The Who. Still on the list are Eric Clapton, Beyonce, Aerosmith, Julia Nunes and even Justin Beiber. Musicals, comedy acts and sounds of nature are also on her list.
After all of this is over? She wants to play percussion like Evelyn Glennie, using her body to feel the vibrations. She wants to be an advocate for the Deaf and bring music to them.
For me, her story strengthens my resolve to show my daughter as much of this world as possible, in sights and sounds before the day comes when her way of experiencing it changes.
Read more of her story here
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