Sounding out
While living in Vermont in 1998ish, "it" suddenly happened. You know, the "crackling" sound. Oh my...what was that? Must be a mistake, a weird thing that was a "freak occurrence." WRONG! The local ENT doc said I had acid reflux and to stay away from chocolate. WHAT? No way.
When I moved back to Martha's Vineyard about three years later, "it" was getting more frequent. For several years, my second income was singing in church at weddings and funerals. What really concerned me was, as I was singing a solo, I hit this note that was out of nowhere, off the charts and way off key. YIKES! How embarrassing! (Even the group leader turned around and gave me this look of "What the heck was THAT?") I knew something was really up because I had no control over the "sour" note.
Martha's Vineyard has limited services and no voice specialists, but there's an ENT doc that visits once a month and I met with him. He referred me to another ENT, in Quincy, who said that I might have Spasmodic Dysphonia (SD). I asked him to repeat what he said and what does this mean? (At least I found out there's a name for "it".) He referred me to the Voice Center at Mass General Hospital in Boston. I spent the day with the docs and techs taking a battery of voice tests. (I must say, I had hope that my voice would become "well" again....that I would get my voice back.)
Meanwhile, I remembered this woman living on the Vineyard whose voice sounded similar to mine. We met for dinner and I had this sense of belonging just talking with her about our common malady. I realized I wasn't alone. WOW! Someone else knew how I felt, understood when I said I was grieving the loss of my voice and that I was depressed. We talked about the different ways people respond to our voices: "I can't hear you." "Please speak up." "You poor thing, do you have laryngitis?" "You sound so sexy!" "How long have you been sick?"
One day at a time I'm choosing to live in the solution. I have to laugh because I did so much talking prior to SD, that I think God wants me to do more listening. Anyway, all we really want is a "good listening to."
This journey has given me more compassion for others. Gratitude is so much more a part of my daily life. After a lot of prayer, research and questions, I'm getting up the courage to have Botox injections. The closest doctor is in Boston which is a full day trip between the ferry, bus and walk to the doctor's office. But hey, I'm worth it, and so are YOU!
I am truly grateful to have found the National Spasmodic Dysphonia Association and appreciate the opportunity to tell part of my story.
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.
