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.
The 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, MA 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 who's 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."
Personal Experiences
Alice June Thompson.
