I remembered one of my doctors say, “You should start to sound breathy in a day or so. It was two days since the Botox injection and my voice was still the same. I waited anxiously, hoping for the treatment to take effect.
Now that I had a diagnosis and treatment, some people expected me to sound normal. At work, someone joked and said, "Iris, I can hear how much your voice has changed. Not!" After forty years without a useable voice, I should have been used to this. I wanted to reply back, but the knot at the bottom of my throat was still there. I couldn’t utter a sound.
My throat hurt from the injection and it was feeling tighter than ever. My voice quality remained choppy, and I started to question if it would ever change. I wondered, “Maybe I’m one of those people who can’t be helped.” I had to accept that possibility.
Mid-afternoon on Friday, three days after the injection and the last day of 1999, I suddenly had a very whispery voice. Talking with my sister on the phone that evening, she stopped me in mid-sentence. Ellen said, "Iris, listen to yourself! Do you hear how you're talking?" There was silence as I stopped and realized that I had been talking nonstop and, except for having a voice that reminded me of a deep-throated version of Marlon Brando’s Godfather, I almost sounded normal. The feeling of strangulation I had when I tried to speak for the last forty years was gone.
Dr. I had warned, “You’re going to be very tired. When you stop feeling tired, you’ll know that the Botox isn’t working.” I had been exhausted the last few days, and fell asleep way before midnight on New Year’s Eve. When I woke up the next morning, the hoarseness was gone; but so was the obstruction I normally felt in my throat. The day was crisp and perfect for a walk. Almost as soon as I was outside in the cool January air and started speaking to a fellow walker, the raspy voice was back. The Botox had worked.
I should have been elated, now that I had my long-awaited diagnosis and a treatment for my speech disability. But, I hated my voice. I thought I sounded worse than before. My speech still wasn’t smooth and I sounded like a thug. I felt shallow about this, but it bothered me. I thought, “Will I ever sound normal? Or pretty?”
My husband found me sitting in the dark, buried in self-pity. He asked, "What are you doing?" I tried to explain, "I fee-eel miserable. I sti-ill can't spea-eak right and now I sou-ound e-even wor-orse. I sou-ound l-ike the G-odfa-ather!" Jim immediately responded, "Well, what on earth did you expect? It hasn't even been a week!" He looked at me and continued, "Just be patient. The doctors told you it would take time to sound normal." He left me. He probably couldn't stand to be around me. At that point, neither could I.
That afternoon, I was timid about attending a friend’s New Years Day party with my rough-sounding voice. Someone mimicked me when I spoke. “Boy, you sound like a gangster,” the stranger said. Then, with a laugh, he asked, “Are you sick?” This time I was able to respond. “No,” I told him, “I had an operation.” My comment stopped him cold. And, after a lifetime of not being able to speak for myself at times like these, it felt good.
The next day my speech was smoother when I said single words, but there was no fluency when I strung words together. I noticed that, somehow, the effect of the Botox forced me to speak in a higher register. There was a lot less volume, so I felt like I had to scream in order to be heard. The right side of my throat – not the left where I had been injected – was dry. If I didn’t sip drinks, I would cough. Hiccups were frequent, and I had to clear my throat all the time. My voice felt very weak, like I had laryngitis and it could go at any moment. Finally, I stopped talking. This must have been what the doctors had joked about when Dr. C said, “Our patients can’t usually talk for about a week after the treatment. Their spouses always look forward to these procedures.”
As my voice became more gravelly, I reminded myself that the Botox was an aid, not a cure. This wasn’t going to be a quick fix. I needed a lot of speech therapy if I was ever going to be fluent again.
When I called to make my first therapy appointment, I was terrified of giving Dr. I my usual choppy delivery, and of sounding so hoarse. Using the telephone had been a painful experience because my voice always froze. However, the first time I called Dr. I, he said, “The injection worked! You sound beautiful!” I couldn’t remember anyone ever responding to the sound of my voice like that before.
As luck would have it, a truck hit my car on the way to my first therapy session. The car was almost totaled, but no one was hurt. Naturally, I was concerned about my car, but I was much more upset about missing my appointment. "Gee, I'm really sorry about this," the guy who caused the accident said. My throat was very tight and my voice had hardly any volume. With so little voice and my emotions all over the place, I just let it go and said nothing.
Speech therapy was very difficult for me in the beginning. But it is where I learned to speak again. Dr. I taught me how to use the Botox, and gave me an understanding and approach to the production of speech. For the first year of therapy, he also scheduled my injections.
The injections were only given one afternoon a month. I was very nervous each time. Dr. C often said, “Relax, Iris. Just try to relax.” It was hard for me. I worried that the Botox would be bad and not have any effect, or I would swallow it, or something would go wrong. All of these things happened over the years, but — overall — the shots worked.
The first year after my diagnosis, I received an injection and therapy every three or four months. The units of Botox varied as the doctors saw the effect each amount had on me. They wanted to give me enough treatments so the fluency I gained wouldn’t be interrupted. As time moved on, I received injections about twice a year and my therapy sessions followed a week or two later. Eventually, when I stopped seeing Dr. I regularly, I still spoke with him after every injection. And, if a problem arose, I knew I could always turn to him for advice.
The worst part of my speech therapy was when Dr. I inspected my larynx. He placed a surgical tube into my throat. It was hooked up to his computer, so we could see the folds of my voice box and how they moved. It was visual proof for him that everything was working correctly.
Another thing I hated in therapy was when I was asked to read aloud. I dreaded this as much as using the telephone, because my voice was so dysfunctional. I read the same thing at every visit and Dr. I recorded it. In the beginning, it was painful to hear myself. But, hearing my voice change for the better over time was like witnessing a miracle. About two years into my treatments, I thought I almost sounded normal. It was around that time that Dr. I said my fluency was about eighty percent.
When I began being treated for my speech disorder, I started a log. I tried to write down everything the doctors told me, including all the answers they gave to my never-ending questions. Over the years, I learned some great techniques.
- Speak slowly. Not only does this make one more mindful about speech production; it regulates the breathing and promotes relaxation.
- Raise the voice pitch. A higher pitch eases vocal tension, and sometimes helps to amplify the voice. Ever since my affliction began, my voice was all over the place. I was constantly searching for my true register. My voice was so problematic for so long that I didn’t know where or how to place it. I spoke in different registers throughout the day and it never felt like my voice belonged anywhere. As the day wore on and I became more tired or tense, my voice lowered — the complete opposite of where it should go. Now, if I need to, I’ll yawn. It helps me to relax and raise the pitch.
- Use a voice amplifier. In 2002 I acquired an amplification device, called an Ameriphone. When I hooked it up to my regular phone line, it amplified my voice. Unfortunately, it also amplified other things that were nearby, like running water or someone else who was speaking. I stopped using the device after a year or so, but my guess is that it’s improved over the years. If it is used in a place that’s quiet, it definitely helps when the voice is very weak. (See link for Deaf and Disabled Telecommunications Program)
- Carry a whistle. I used to have a dog that ran away all the time. When my voice was weak, I couldn’t call him, so I started to wear a police whistle. Sometimes my husband can’t hear me from the next room either, so I need to have a whistle nearby. A little thing like this is great for peace of mind, any emergency, and overall protection.
- Lie down to use the telephone. Since the phone is one of the hardest devices to use for anyone with a speech problem, lying down is a good technique. It almost instantly creates relaxation, helps to improve the voice quality, and increase volume.
- Create an echo feedback. If my voice isn’t doing well, I press one finger to my ear and create an echo feedback. It improves fluency.
- Speak in rhythm. If I’m having a bad speech day and the words don’t flow, I metrically break up the words and speak them as if they were musically measured out. Each word or syllable is spoken in the same amount of time. For example, if I say, “I-do-not-wish-to-go-with-you,” each word gets one count.
- If you can, don’t speak. Sometimes I find that I try to speak just to be nice. Now, if my voice isn’t working well, I whisper or try to say something brief like, “My voice is gone.”
- Avoid loud places. When my voice is weak, it isn’t fun to go to parties or restaurants, so I don’t. Over the years, I’ve done more socializing where I don’t have to scream to be heard.
- Give yourself a break. If your voice is weak, or trying to speak is painful, do something else. Try not to obsess on your speech. Watch a comedy and get your mind off of it. Or, communicate through email or texting.
I will need treatments for my speech disability for the rest of my life, so I hope the injections and techniques will keep my voice going. If you are coping with a speech disability, or you know someone else who is, I hope my tips and tricks will help. Living with a severe speech disability can be very hard, but if we support each other and share what we learn along the way, it’s bound to help us all.
