Other News New Advocacy Website Launched
Scientific Updates
FDA Approves Xeomin for the Treatment of Cervical Dystonia and Blepharospasm
Research Opportunity in Spasmodic Dysphonia
NSDA Funds New Research Grant on Spasmodic Dysphonia
Dystonia Awareness Week: June 6-12
Message from NSDA's New President - Charlie Reavis
The Congressionally Directed Medical Research Program Adds Dystonia to the List
NIH Funds $6.2 Million Dollar Grant for Focal Dystonias
Spasmodic Dysphonia and Quality of Life Research Study Results
Botulinum Toxin Update
NSDA Funds Research Grant
Brainstem Pathology in Spasmodic Dysphonia
Research Priorities in Spasmodic Dysphonia
Participate in the 2010 Dystonia Advocacy Day
Share Your Story Winner Announced
The Experience and Impact of Reading the "Share Your Story" Entries
Spasmodic Dysphonia Featured on ABC's Medical Mysteries Program
Changes in the Brain Identified in SD
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
Comments
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The Experience and Impact of Reading the "Share Your Story" Entries
By Mary Bifaro,
NSDA Support Services Director and SYS Committee Member
When reading the entries of the NSDA’s “Share Your Story” Contest on our website, I felt a whole gamut of emotions. One of the first feelings that emerged was one of pride in the NSDA, and in the close to 80 people who told their Spasmodic Dysphonia story. I applaud all those who responded to the NSDA’s invitation to let their SD voices be heard. This contest is one of the latest examples of how the NSDA continues to distinguish itself as a patient-driven organization and invite members’ participation in achieving our mission. The “Share Your Story” contest is truly one “of the people, by the people, and for the people” who are affected by SD.
The essayists in our “Share Your Story” contest exhibited a willingness to talk about what they went through on their SD journeys. They discussed their symptoms, how they came to be diagnosed, what treatment options they selected (if any), and the resulting effect on their spasmodic dysphonia voices. They discussed how a diagnosis of spasmodic dysphonia affected their self-esteem and self-concept. They talked about life lessons learned from being a spasmodic dysphonia warrior. They elaborated on the reactions they received from others due to the sound of their voice. They shared the “highs” and the “lows” of their SD journeys.
A common theme expressed by the entrants was that having a chronic physical inability to speak has made them more sympathetic to others who are struggling. They described a humbling loss and a change in their lives. Grappling with the reality of having SD made them summon all the coping skills that they could come up with. Many essayists also related that having SD has made them better listeners. Communication was something that they would no longer take for granted. They were well aware of all the problems they were experiencing in communicating, and they were doing their utmost to make the best of a difficult situation.
Many contestants expressed their gratitude to the NSDA for sponsoring this contest and for the important work that it does. A number of the SD personal stories talked about how much help and encouragement they have received from NSDA support groups, NSDA symposiums, and the NSDA bulletin board. They expressed an appreciation for being in the company of others who understand what they are going through.
The courage and toughness displayed by the entrants of the NSDA’s “Share Your Story” contest is evident. They demonstrate perseverance in overcoming the frustration and embarrassment of not being heard or understood. They show resilience in pushing forward in their personal and professional lives. They make decisions to accommodate their voice impairment. They ask others to work with them so that they can fully accomplish their goals.
After coming to grips with their SD diagnosis, the storytellers demonstrated hope for themselves and for their future. They realized that they are not alone, that there are others going through what they are experiencing. They don’t want SD to define who they are. Rather, they show a desire to rise above the challenges of having SD. They are resolute in their determination to live their lives boldly. They are willing to make changes in their lives so that they can reach their potential.
Some of the writers changed careers and found greater satisfaction in new places of employment. Others found successful treatment which enabled them to keep the jobs they had been doing before SD entered their lives. Others found a place in service to the spasmodic dysphonia community
Some of the contestants sought consolation from their spiritual life or counseling. Some expressed that fellow SD patients showed them how to live with SD. Many essayists were grateful for having a sense of humor to help them get by with their SD voices.
They talked about their disappointments too in the reactions expressed by others. They were surprised that others would think that they were making the problem up or were told that the problem would go away if they would only relax. They related their tales of conflict with insurance companies, with their employers, with their friends and with their family. They talked about battling with themselves over their feelings of desperation, humiliation, shame, and self-blame.
The emotional stories submitted in the “Share Your Story” contest are touching and easy to relate to. I came away from reading them with a strong feeling that “if they can do it, so can I”. These everyday SD heroes have an indomitable spirit. This spirit allows them to overcome their fears and get back up after they have fallen down. Reading these inspiring essays reaffirmed my commitment to stay involved with the NSDA and connected with fellow SD patients. Their stories challenged me to consider making further changes to help me cope with SD. Most of all, the participation by close to 80 SD patients in our “Share Your Story” contest gave me hope to never give up, and to keep on trying.
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