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The Congressionally Directed Medical Research Program Adds Dystonia to the List
NIH Funds $6.2 Million Dollar Grant for Focal Dystonias
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NSDA Funds Research Grant
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Participate in the 2010 Dystonia Advocacy Day
Share Your Story Winner Announced
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Spasmodic Dysphonia Featured on ABC's Medical Mysteries Program
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SD Research Program Launched and Scientific Advisory Board Appointed
CEU Course Available on Spasmodic Dysphonia
Easier Done than Said...Living with a Broken Voice: New Book on Spasmodic Dysphonia
Emily Lim finds her Voice through Writing
Safety Issues Regarding Botulinum Toxin
ASHA provides Insurance Checklist for Speech Therapy Benefits
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Share Your Story Winner Announced
The National Spasmodic Dysphonia Association asked its membership for stories about how spasmodic dysphonia (SD) has impacted one's life for the better, what lessons have been learned from having SD, and how has SD made one live life more boldly?
We are pleased to announce that Elizabeth J. Bachini is our winner! NPR journalist and author Diane Rehm pick Elizabeth's essay after the top 20 entries were reviewed by the ‘Share Your Story’ (SYS) Committee and narrowed down to the five. Diane said about the essay:
I chose Elizabeth Bachini's essay because I felt she gave the most articulate and powerful illustration of what it is to have one's voice, and then to lose it. She very clearly tells us of her hopes and frustrations, as well as the efforts she made to overcome her impediment. Elizabeth moved beyond identifying herself only through her voice, and began her new passion for writing and learning to help others, despite her sadness at the reality of her 'vocal imperfections.' She learned about herself through her voice, and, as a result, has become an excellent communicator.
Elizabeth will attend the 2009 NSDA Symposium in Charlotte, NC, on April 4 to accept her award for this contest. We thank all who participated and voted in this contest!
Elizabeth J. Bachini
Thanksgiving 2004 is the last time I remember having a normal voice. My family and I had just eaten, and my father sat down at the piano, calling for me to sing while he played. It was my senior year at Holy Cross, and I faced a daunting honors thesis and workload. A long-time vocalist, I did not have time for singing anymore. That Thanksgiving, however, I enjoyed a brief return to music, and my voice was sweet and clear.
My throat got sore that winter, and its hoarseness persisted. My voice soon morphed into something beyond hoarseness, something strange and inexplicable. An avid participant in class, I found my teachers and peers commenting on the perplexing, persistent “scratchiness” of my voice. Not only could I no longer sing, I was lucky to get through a sentence without my voice shaking and cracking.
I was diagnosed with SD shortly thereafter. I chose to ignore it. Some days were better than others, so I often thought it would disappear or I would simply muddle through. I finished my thesis and presented it publicly, even despite my voice. I dated, graduated, partied, and landed a job like many other twenty-two year-olds, even despite my voice. I explained my vocal problems to my friends with a sense of casualness, never fully disclosing the extent to which the loss of my normal voice began to erode my confidence and sense of self.
Hoping to pursue a career in law, I worked as a paralegal at a Boston litigation firm. I quickly recognized my voice was a serious impediment there. Frustrated, I started Botox injections and rethought my legal aspirations, yet I also began to realize the capacity of my own inner strength. I will never forget one conversation with a partner at my firm, a woman I very much admired. One evening, she asked me bluntly, “What is the deal with your voice?” I proceeded to tell her about having SD. This esteemed veteran of Boston’s legal world then expressed her admiration for a strength I had not yet realized I possessed. “To have something like this at your age, and you just keep going,” she said. Since then, I have led my life to prove her statement true, to become the “survivor” she described. I have kept going.
I did not go to law school, but I did not surrender my ambitions. In fact, because of SD, I approached career decisions far more thoughtfully than I would have otherwise. I reflected on some humanitarian work I did in Africa, and reaffirmed the importance of my ability to research and write. I thus went back to academia to concentrate on U.S-African affairs at Georgetown. I wanted to write about a topic that meant something to me, about the consequences of history and the potential of positive change.
My life has been rich since I lost my voice. I fell in love, fell out of love, relocated, and got my Masters. I have left classes humiliated by my peers’ winces at the sound of my voice; and I have walked back in, raised my hand, and participated anyway. I have struggled in job interviews; and I have earned the respect of influential academics and Washington professionals alike with my ability to write, my passion for my field, and even my ability to communicate well with others in spite of my vocal imperfections. I have bouts of profound sadness over this condition; and I have bouts of profound appreciation for the fact that I understand the importance of health and tenacity in a way many young people do not. Now twenty-five, I look at the next several decades of my professional life with more optimism than fear. It is a professional life that I still approach with great ambition.
I do miss singing. Often, I will hear a great song and open my mouth to sing, and then abruptly realize I cannot project sound as I once did. My dad often forgets too. He still provokes me to sing, and I have to remind him that I no longer can. I suppose that is the small sacrifice I will have to make for finding a strength I did not know existed within me. It is a strength I sometimes wish I did not have to summon, but one which sustains me and pushes me ever forward.
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