Imagine yourself at a restaurant with family or friends. Everyone has ordered their favorite item from the menu and it is your turn to order. The waitress waits for you to decide, but when you open your mouth all that comes out is a very soft, unintelligible squeak. She asks you again what it is you want, again just crackling sounds. You are very embarrassed that someone else has to translate your order for you. Worse yet, if you are alone, you must write your order on a tablet. This is not a bad dream but the reality of living with a rare disorder called “Spasmodic Dysphonia”. After diagnosis by Iowa City hospitals, I discovered through my own research the realities of what the diagnosis would mean to my life. The specialist in Iowa ordered six weeks of speech therapy, which did little good. They did not inform me that if I failed at speech therapy, there was little they could do to return one of my senses I had taken so much for granted.Not only did I love to talk, I also loved to sing. After High School and church choirs, I joined an excellent community choir which was doing “The Messiah” for a Christmas concert at a historic church. Christmas was always my favorite time of year as I especially loved Christmas Carols and Gospel music. I could sing or listen to Christmas music all year. My love of music began when I played violin in high school and also in the local churches. I had an excellent orchestra and private violin teacher who taught me to truly appreciate the beauty of music. I loved to listen to an orchestra, picking out the various instruments and their melodic interpretations of the works of the great composers. You could close your eyes and be transported to magical places.
I still enjoy music as a listener, but performing music really tunes you into your very soul. After many years of vision problems I never dreamed, of all my senses, I would loose the ability to speak in a comprehensive way. So many things we all take for advantage but when a disability befalls us, things we used to do with ease, can become a burden. I no longer experience the convenience of drive-up windows at restaurants or banks. I must park, go inside and wait in line. Then when I have to ask for what I want, trying to be understood over noise on my best voice days, or to write down my request on a tablet while others behind me impatiently look at who is holding up the line. In order to make appointments, I have to call on a “good voice day”, or I have to drive to the doctor’s office so I can be heard in my soft hoarse voice.
When people call me on the phone they think they must have reached the wrong number, or that I must be deaf. People treat you as a social outcast because conversation is just too difficult to comprehend, and when it makes them uncomfortable they blankly start to nod yes and move on to more stimulating conversations. For even the most social people Spasmodic Dyshponia (or SD), can make you become a true wallflower. The effort to speak, and their impatience to understand, just becomes too much work for everyone. For those of us who have very active minds and love to converse ideas, or just be a part of the fun of social activities, the world for us also becomes silent in an odd way. You hear conversations and laughter around you, but are lost in a “black-hole” world. The sound only goes one way and is swallowed up away from you. When you have SD you feel disconnected and lost, and there is no way to find your way out into that other “normal” world.
But even as difficult as living with SD is, I have learned the art of truly listening. A wise man said God gave us one mouth, but two ears because we should listen twice as much as we speak. Many people become so lost in their own desires that they really don’t hear what is being said. We hear the words, but we don’t always hear the message. Thoughts and ideas resonate deeper if you are not interrupting those ideas with your own input. It gives you time to reflect, to think about the ideas of others. Loosing one sense does not make the other senses stronger as some think, but it does allow you to tune into those other senses with new purpose. When I could chatter a conversation as quickly as others, I didn’t notice body language and expressions the way I do now. In my own silence I find I can feel what other people are feeling. I can see excitement, or joy, or frustrations I never noticed before. Even though I can’t communicate the way I once did, I feel I now get the message better than I ever have because I am tuned into the conversations in a very unique way.
