Most people find casual conversation fairly easy, even if they are pathologically shy. For others, just the physical act of speaking is a challenge. National Public Radio's Diane Rehm, whose book, "Finding My Voice," deals with the subject, is someone who lives with a condition known as spasmodic dysphonia (SD), a neurological voice disorder that involves involuntary spasms of the vocal cords and affects voice quality. Ms. Rehm has become a role model for Alice June Thompson, an Islander who also is dealing with this challenge of communication.
Ms. Thompson's voice is husky and regularly breaks into a rasp. Despite her difficulty, she readily communicates about her situation: "I have taken to introducing myself, particularly to groups, as having a speech disorder so that people won't think I simply have laryngitis."
People who have had laryngitis can relate to the temporary loss of voice, but it is hard to imagine that as a chronic state. "It's like losing someone that you love," Ms. Thompson says, "like a form of grief."
In 1998, Ms. Thompson was doing radio advertising, providing voice-overs for ads. She began to experience occasional breaks in her voice, eventually realizing that she had no control over the spasms.
As speaking became more and more challenging, Ms. Thompson searched for answers. After tests and visits to several doctors, she finally went to the Voice Center at Massachusetts General Hospital in Boston. She was diagnosed with spasmodic dysphonia, and met with Dr. James Burns, a noted voice specialist who has treated such celebrities as Julie Andrews. Most therapies are symptomatic, and after a battery of tests, several avenues were suggested, including voice therapy, which currently is not available on Martha's Vineyard, or Botox injections that would require regular trips to Boston and only offer temporary relief from the spasms. She is considering the injections - "I have a friend here on-Island who has been battling the condition, too, and she has been receiving Botox injections for 10 years."
Ms. Thompson admits a need to communicate with the Martha's Vineyard community about her situation and how she is attempting to cope with feelings of isolation. In her research about the condition, Ms. Thompson, who works in the medical records department of Martha's Vineyard Hospital, discovered a contest called, "Share Your Story," sponsored by The National Spasmodic Dysphonia Association, and judged by NPR's Diane Rehm. It was designed to create a dialogue among those dealing with SD, and get them to be in touch with others afflicted.
Ms. Thompson entered the national contest and although didn't make it to the finals (she was ranked in the top 20), the contest opened up new avenues for communication leading Ms. Thompson to consider forming an online support group. "When things are not perfect it is easy to be frustrated and to react to situations in ways you don't like," she says. "I try to remember not to give up before the miracle happens."
Many essayists said that having SD made them better listeners, as communication was something they could no longer take for granted. Like them, Ms. Thompson is trying to make the very best of a difficult situation.
Mary-Jean Miner is a former staff member at The Martha's Vineyard Times.