In 1984 I had to drop out of choir because I could no longer hit the notes I used to. I have a great ear for music and that was my first indication that my voice was changing. Little did I know that it was going to be a lifetime challenge. My voice disorder became distinctly noticeable, so much that my peers started teasing me. It sounded like a digital phone with a bad connection. You could only hear bits and pieces of what I was saying. After a few years of wrestling with my voice, I convinced my mother to take me to an EENT. To no avail, he indicated there was nothing physically wrong and advised my mom seek other help. My intuition told me that it was physical and I trusted that for years to come.
Four years later—still no answers. Sometimes I thought I would sooner have had a diagnosis of throat cancer than to just not know. I often went home completely frustrated from social gatherings like dances, restaurants, concerts, etc. My voice lacked volume and clarity so conversation was difficult at best!
It was in college that a friend one day handed me a quip from Ella Wheeler Wilcox, "There's no chance, no destiny, no fate, that can circumvent, hinder or control the firm resolve of a determined soul." That saying gave me strength to be a contribution to other people's lives, and not worry about what I lacked.
I left school to serve my country by joining the ranks of the Army paratroopers and being the only female in my permanent duty station! Up to this point I always avoided jobs that required me to be on the phone. One of the hardest things for an SD patient, next to child birth, is talking on the phone! However, the position I landed during Desert Storm was a phone job-- calling companies to let them know how many soldiers they were receiving that week. My voice worsened with the stress of war, lack of sleep, and dealing with impatient, uncompassionate men on the other end of the phone. That was my breaking point. I emotionally struggled through each day only to find myself on my bed crying myself to sleep. I had to dig in again to see if I could find answers about my voice.
The speech pathologist at the Army Womack Medical Center on Fort Bragg was my saving grace. She gave me more hope than I could have ever asked for, but in the same breath more discouragement. "You have a rare voice disorder, Karein. It is called abductor spasmodic dysphonia. There is no cure for it, and speech therapy won't do a lot for you. They do have a new drug that they are trying on SD patients. Right now there is only one place in the United States administering it." So, in 1991, I laced up my jump boots, tucked my hair back under my beret, and exited with a new found strength.
In 1994 I moved to Arizona and found an EENT surgeon who was trained in administering Botox into the vocal chords. In 2007 I had a type 11 thyroplasty surgery with a hopeful 70% to 80% voice quality increase. To the dissatisfaction of my surgeon and my own painstaking disappointment my voice didn't change much at all. Every three months I get an injection to try to keep my voice smooth. It is difficult enough trying to parent four children as well as teach children with Autism when you don't have a nice loud "teacher's voice". I can't teach the conventional way, so I have to modify instruction and group size. I teach small groups only or one-on-one. My students have learned to listen, and I have learned to communicate.
My own children, on the other hand, have learned one thing for sure, and that is; you better come running when mom whistles! All four come running, even if only one is needed. I can get them home from down the street, have them find me in a store or locate them in a stadium full of people. I may not have a powerful voice, but I have power in my whistle. My voice has taught me to be resilient, laugh, adapt and overcome, and boldly take on any challenges. It has taught me compassion, patience, acceptan.