During the forty years that I lived with an undiagnosed speech disability, I often wondered if there was anyone else who had my problem. I met a few people who stuttered, but no one who spoke like me. It was not until after I was diagnosed with spasmodic dysphonia (SD) that I began meeting others like me. I met them while waiting to see my doctors, via friends on email, or through speech organization connections. Some I just heard about.
One story was about a young girl from the Philippines. She was a teenager when she was diagnosed with SD. Her father was a doctor, but her grandmother determined that the girl was possessed by the devil. The young girl begged for treatments, but her grandmother — who ran the family — refused. She demanded that the girl get an exorcism. I was sad to hear this but not surprised. It reminded me of the denial and unusual treatment I experienced as a child, from those who were the closest and dearest to me.
Another story was about an SD patient who kept putting off pregnancy. As long as she was pregnant, she couldn’t get Botox treatments. Not only does this story bring home how difficult it is to live on a daily basis without treatments and a useable voice, but it reminded me of all the years I worried about having children too. I was concerned that I wouldn’t be able to care for them the way I wanted to because I could barely speak. Additionally, I didn’t know if they would inherit whatever I had. I never had children, but I hope the patient I heard about did.
The first time I spoke with someone who sounded like me was in July 2001, forty-one years after my speech problem began. I met Ms. M while waiting for a Botox treatment. By that time, I was about 70% fluent, but Ms. M was not. She had been a teacher and appeared to be in her thirties. When we communicated, I had the odd feeling of being the ‘fluent' one. Her broken voice had so little volume that it was hard to hear her, so she sometimes wrote what she wanted to say. I nodded in agreement when Ms. M relayed how tired she was at the end of the day because of all the energy it took to speak. When I told her how long I had been undiagnosed, she was shocked. She had been afflicted with SD for two years, but was diagnosed at the onset. I thought, “How lucky.” Later, though, I felt terrible when I heard that nothing could help her. She would probably lose the little voice she still had.
For a while I emailed regularly with a friend of a friend. He was like most of the people I met with SD whose affliction began in adulthood. Due to a traumatic incident, he suddenly lost his speech. From that point on he could only whisper. Although we both were diagnosed with the same disorder, I learned that we had different types. Mine, adductor SD, is where involuntary spasms cause the vocal cords to slam together and tighten. With his type, abductor, the vocal cords open. Although our symptoms are different, both types can be treated with Botox.
On one of his emails, just before my first treatment, he wrote, “I used to get the Botox regularly, but now I only get it when the volume of my voice goes.” At first I didn’t understand what he was talking about, but now I do the same thing. As I was learning how to speak again, I was terrified that my voice would go at any moment. Out of fear, I scheduled appointments more often than I needed. Eventually, after I learned how to speak and could feel the difference in my voice with and without Botox, I knew when it was time for another shot.
One afternoon, on a visit to see Dr. I, I met a woman who was probably in her fifties. With a big smile on his face, my doctor said, “Our SD patient here had surgery yesterday, and already she sounds great.” The woman started to chat with me. She giggled in a very clear voice, “I feel absolutely fine! I’m so pleased!”
I knew that surgery was another treatment option, but I had a secondary tremor that prevented me from ever getting it. Still, I was curious. I wanted to hear from other people who had it. What did they think?
Through the National Spasmodic Dysphonia Association, I connected to an online forum in 2003. One woman from the forum lived nearby, so we met for coffee one day. When we introduced ourselves, she mentioned, “I have a pretty mild case of adductor SD.” It was true. I could only hear a slight trace of the disorder in her speech. She continued, “Both my brother and mother have SD. Like you, we’re of Ashkenazi Jewish descent, so I believe it’s genetic. Mother had the old surgery, called RLN section. That’s where they cut a part of the laryngeal nerve. It didn’t help her at all. In fact, it changed the quality of her voice and it was hard to listen to her because she sounded so strange. The fluency my mother got from the surgery didn’t last, and she needed more Botox treatments. In the end, nothing seemed to help.”
Other people from the forum were more than willing to share their surgery experiences with me as well. Most of them said that their symptoms went away after their operation, but then returned. They informed me about a newer, less invasive surgery, but no one was interested. And, when I asked if they would get surgery again, the majority resoundingly said, “No.” One person ended an email by saying, “Just remember, this is your body. When you have surgery, they remove a part of it. There’ll be a part of you that’s gone forever; you’ll never get it back.”
Over the years, I also met others like me by chance. On a vacation one year, I heard a stranger speak and I was sure she had SD. However, I didn’t say anything. Even with all of my experience, I didn’t know what to do. The next time this happened, I did. It was at a funeral service, and the woman was probably in her seventies. When she spoke, I didn't hear the voice of the elderly, but my natural voice with the unmistakable staccato quality of SD. When the service ended, I approached her. I told her my story and shared my opinion about her speech. She almost cried, “I-I’m s-o g-lad to h-hear th-is! I s-aw my ge-eneral d-octor and he t-old me i-it’s p-robably allergies. I c-an h-ardly w-ork at m-y j-ob anym-ore.” I said, “Even if it’s not SD, you should still see a speech specialist. Your regular doctor probably doesn’t even know about spasmodic dysphonia or other voice disorders.” I left her with a smile on her face. Her last words were, “I-I’m s-o re-elieved.”
I have gained much by meeting others like me. We have discussed treatments, the medical community, means of communication, and what our daily lives are like. Because of our commonality, the connection I feel towards them runs deep. There is a feeling of reassurance that others experience and view the world in a similar way. We appreciate silence, respect, and understanding. We know that we must be patient and compassionate when people stare at us in a funny way, or ask to hear over and over again what we just struggled so hard to say. Even though it may hurt, we are grateful to know the truth. Although we are often cut-off, we try to keep a sense of humor and live life to the fullest.
Now that I know I am not the only person with my problem, I no longer feel so alone. Yet, it is bittersweet, because there are so many others like me.
