I read your invitation to 'tell my story' how Spasmodic Dysphonia has impacted my life for the better! They have to be kidding, I thought to myself! They have not been beside me in the store when the clerk asked for my address and I was so uptight over what kind of noise would come out of my mouth that I forgot it! The clerk turns around to her co-worker and says, "She forgo her address!" How easy to melt into tears. Impact for the better! I tossed "My Voice" publication aside. That's not for me!
Not long after I received an e-mail message saying the dead line had been extended. I began to search my memory thinking maybe I have had some positive associations with SD.
I had been teaching school for about 15 years when I noticed in the teachers' lounge I was having a bit of a problem getting words out. Prior to that I had been teaching adult Sabbath School class every week and I had developed a bad cold that seem to have affected my throat. I kept clearing my throat and apologizing for my voice not cooperating. That was the beginning of the SD onslaught!
I made the usual 'rounds' to the voice specialists. One told me to pitch my voice lower… but she really did not know the cause. I was also sent to a doctor who specialized in allergies. He wanted to give me enough thyroid medicine to make my thyroid stop functioning…the guinea pig route. Hmmm, no thanks! You know what they say…if ain't broke, don't fix it!
As time moved on my voice became less manageable. Lady in my church referred me to an Ear, Nose and Throat specialist in Cincinnati. I was hoping he would help me get an early retirement but when he listened to my voice he said it wasn't bad at all. "Eventually," he said, "you will lose your voice completely." I didn't want to hear that…I didn't go back!
Then I was referred to a speech therapist in Dayton. That is where I was diagnosed with SD. He told me that my voice should level off, which was far better than 'you will lose your voice altogether!' He worked with an ENT surgeon who gave me Botox injections until they were no longer effective.
My voice has gotten progressively worse with a few good days interspersed here and there, for which I am grateful. Isn't it too bad that we take this wonderful gift that God has given us as if it is 'part of the package' and we never, ever expect to lose it? The gratitude comes too late for those of us who now have a condition that leaves proper pronunciation of vowels and consonants impossible – even for teachers who used to teach phonics!
A good sense of humor helps cope. I walked into the bank shortly after having a botox injection. One of the vice presidents, accompanied by a client, greeted me and my husband quickly said, "She is not allowed to talk, she just had a shot." The client quickly asked, "Where do you get those shots? I want one for my wife!"
Also, I've learned to listen! I listen to others when they talk and have found out you can learn a lot by just listening! I am part of a very verbally active Sabbath School class. With this 'whispering disease' it is difficult to make yourself be heard. I have resorted to raising my hand and in my loudest voice say, "Wait, it is my turn!" After the class one day, one man said to me, "Janet, you are like B.F. Hutton. When you talk people listen!" For those of you who don't know, that was a TV commercial where in a multitude of voice, when B.F. Hutton talks….everything gets very still! That is exactly what happens! When I throw my little 'my turn' into the mix it gets very quiet and every eye is on me. It almost makes me forget what I wanted to say!
Despite the strained voice I am still me. My personality is still the same, my thoughts, my hopes and my ambitions are the same. And I still do have a voice. It may be different than the voice I started out with, but it is still there. I am determined to let my voice be heard, one way or another.