Another Voice

Note: Big D for Deaf refers to people who identify themselves as culturally deaf. They will have a strong Deaf identity, attend schools for the Deaf, and mainly associate with other members of the Deaf community. Small d for deaf refers to the condition as well as to deaf people who identify more with the hearing or mainstream, and regard their hearing loss only in medical, not cultural, terms. From deafness.about.com


When my speech problem emerged just before high school, I was desperate to find another way to communicate. With the voice as my sole means of expression in 1960, it was no wonder that I wanted to learn ASL, American Sign Language.

As a hearing child of hearing parents, attending a Deaf school was out of the question. In those days my parents had a perception that the deaf were inferior. Many misconceptions about them resulted from deaf peddlers back then – probably the only deaf people that most hearing people knew about.

I remember seeing deaf peddlers in the street in the 1950s, and some of them even showed up at our front door. The peddler would present their card. It often had the ASL alphabet printed on it and a phrase that said something like, “I am deaf. Can you please help me?”

All I knew about the peddlers is that they didn’t speak or that it was very hard for them to do so, just like me. So I liked the idea of going to school with them or anyone who was deaf. I saw how they used their hands to say things, and I wanted to learn how to do it too.

I wasn’t able to learn ASL until much later in life, when I was 58 years old. By then I had been diagnosed for my speech disability and was getting treatments for it. Yet, my treatments didn’t always work, or I might have to wait months to get one. I knew that, without medical intervention, I could never speak normally so I still wanted to learn how to use my hands to express myself; to simply replace my voice with another one.

As hard as it was for me to learn ASL, I could see how easy it was for many of my younger, college-age classmates. They made me think back to when I was their age and earlier as a teenager, struggling to communicate without speech.

Throughout my teens, I often asked myself, “How will I earn a living?” Even though I excelled at typing and stenography in high school, I questioned, “How good of a secretary can I be with my speech problem? I can hardly use the phone. What am I actually capable of?” It was obvious that I couldn’t teach or do anything that relied on my voice.

While studying ASL, I wondered how different my life would have been if I had learned it early on. Perhaps I could have become a teacher of the Deaf, and would have been spared the anguish I experienced whenever I was forced to speak at school, in social situations, interviewing for a job, working at a job, trying to use the telephone, or even out with friends. If I attended a Deaf school growing up, would I have found the support and understanding that I felt lacking in my youth and for much of my life? Would I have become more confident? I don’t remember ever doubting my intelligence. But, throughout most of my life, I felt that I couldn’t express it.

In one ASL course, the instructor discussed how the Deaf suffered a history of being forced to speak in schools and in mainstream society. He signed, “Can you imagine that the Deaf were forced to go to schools where ASL was forbidden and they were made to speak?” Even though his question was rhetorical, I raised my hand. I told the class interpreter, “I u-understand this. I’ve h-ad a speech disability s-ince ch-ildhood and I’ve been forced to s-peak all of my life. I f-feel that I’ve l-ived with the s-ame problem.” My instructor stared at me, looking shocked. He asked, “You’re hearing but you can’t speak?” I was able to respond directly to him this time and simply signed, “Yes.”

This common inability to speak, while often being forced to do so, was the connection I always felt towards the Deaf. Yet, I was a hearing adult who only knew other hearing people. Was this shared experience with the Deaf what made me feel that I might have a lot in common with them? I was curious to find out.

My ASL program involved volunteer work for one semester, but I extended it. I worked for almost a year with a Deaf advocacy organization, for six months at a school for the Deaf, and I also studied privately with a Deaf tutor for almost a year. The majority of people I met were always patient and glad to help me with ASL, but the best part was the special closeness I almost always felt after I told them about my speech problem and our unique commonality.

No Deaf person I met ever knew a hearing person who couldn’t speak, so I was something of a novelty. I’d often sign with them about my take on the ASL sign for the hearing, where the index finger circles outwardly from the mouth as if to indicate the utterance of words. I would say, “I think this needs to be changed. It has nothing to do with me!” They would laugh and tell me how that’s part of the language so it probably won’t change anytime soon. Then, I’d usually add, “Seriously, I always wanted to learn sign language because it was so hard for me to speak. You know, there are hundreds of thousands of hearing people in the world who, for one reason or another, can’t use their voice. Wouldn’t you love to see them learn to use sign language too?” No one ever laughed at this idea. They readily agreed.

Learning ASL did give me a new friend from all the Deaf acquaintances I made along the way. Although I met Laurie because I know ASL, our friendship has little to do with the fact that she’s Deaf or that I’m hearing. Like all of my other friendships, it is based on mutual respect, a strong sense of humor, and an ease and joy of being in each other’s company. The remainder of my personal life is in the hearing world.

Luckily, my ASL studies brought me employment with preschool Deaf and hard-of-hearing children. Here I am often with other adult hearing ASL signers, as well as hard-of-hearing and Deaf adults. The goal of my work is to teach the children ASL, as it will be their first language and become their native tongue. In this arena I may witness a child use their hands to communicate for the first time, and I am reminded why I wanted to learn sign language in the first place.

In the hands of an expert, sign language can be a thing of grace and loveliness. For me, though, its greatest beauty lies in giving a voice where there was none. As a Deaf instructor once said, “If others rely on your speech and you have none, it’s impossible for them to realize your strengths.” Thank goodness for the strength of a people who cannot speak, and their incredible creation of another voice.

Once I Had a Voice

Speaking wasn't always a struggle for me. Until I became unable to speak around the age of twelve, my voice was clear as a bell. When I was little, my parents said that I had a good pair of lungs. Where I grew up, this was priceless.

I was raised in the 1950s. My family lived on Chicago’s north side in a neighborhood that was predominantly Jewish. Whether we were walking down the street or spending an afternoon at home, I was surrounded by noise and non-stop banter. Constant gab epitomized the world I lived in for the first eighteen years of my life.

There was always a lot of shouting and laughing in our home, but everyone I knew talked a lot. There were no computers or email, so we all relied on speech and the telephone to communicate. To be in on the action, I had to be able to speak. As my speech worsened in my teens, I became a good listener but I felt like I was on the outside. I tried my best to express myself through my broken utterances, but it would remain my biggest challenge for decades. Luckily, I had something else.

I was eight years old when Mommy bought a piano, insisting that my sister Ellen and I learn music. Ellen hated it, but I loved the piano as soon as I touched the keys. I spent hours practicing everyday to become competent. Yet, without any effort or training, I could sing. Even when my speech fluency was gone, I could still sing, and do it incredibly well.

It was easy for me to memorize the words to songs. I sang every one I heard on the radio, every show tune that my parents listened to, and I learned classical pieces too. As I got better on the piano, I accompanied myself. Sometimes it embarrassed me, but I was proud that Mommy wanted to show off my musical talent whenever we had visitors. Yet, with my splintered speech, it made no sense to me or anyone else why I could sing as well as I did. At one moment I could render a beautiful song; in the next my strained speaking voice made me unintelligible.

As my speech worsened, I relied more on singing to steady myself. I tried to control my speaking voice with the same techniques I used to sing, but nothing worked. While my singing improved, my speech flip-flopped from bad to worse.

If I ever thought of myself as a speaker, it was lost in my teens. I was ashamed of the way I struggled to speak and how badly I sounded. Some friends shocked me when they said they liked my speaking voice; I thought it was ugly. I struggled so hard to speak, but could only emit jumbled and broken sounds. If I could have remained silent, I would, but there were always people around who expected me to engage with them verbally. When I sang, the pain I felt in my throat when I tried to speak was magically gone. I produced sounds that were beautiful and, in the moment, I felt good about myself. Singing gave me a tremendous means of expression, and an escape from all of the shame and worries around my speech. I thought of myself as a singer, even though I could barely speak.

Of course, it was impossible to sing my way through life. After I sang for others, they would often ask me a question or try to engage me in conversation. I could feel my throat tighten as soon as I tried to respond. When my shaky, unusable voice emerged, I could see that people were shocked. I had no explanation why I spoke the way I did, so I tried to put people at ease and make light of it. Frequently, I’d say, “Ah-I’ve g-ot s-ome cr-crazy q-uirk in me! Ah-I d-on’t g-et it ei-either.” Then I’d just try to move on and pray that whomever I was attempting to speak with would do the same.

In college, I majored in music. Many encouraged me to declare voice as my major instrument, but I didn’t. By then I recognized that my speaking voice would vary like the wind, from being slightly broken to totally incomprehensible. If I was very calm, my speech was better. But, for the most part, it was bad. I still hated the staccato-like quality of my speaking voice, so I knew I didn’t have what it takes to be a professional singer. I could easily sing to a captive audience, but never speak.

In the late 1970s after graduating college, I continued to study classical singing. My voice teacher said that the San Francisco Opera was auditioning for choristers, so I decided to try out. I worked hard to get myself calm and ready for the audition. When I arrived at the opera house, I found out that over 200 people were auditioning for six openings. As soon as I began singing for the panel of judges, I could feel the power of my breath surging up from my diaphragm and out through my mouth. There was enthusiastic applause when I finished. We spoke a little, and — because I was so confident and relieved by my performance — I managed to speak at my best.

Two weeks later I was asked to perform again. The chorus master said, “We have three singers we like, but we only have room for one.” Even though I was more nervous this time, I was chosen. Before I left, one of the judges said, “You have the voice of an angel!” I thought to myself, “Yes, but only when I sing.”

I sang in the opera chorus for five years. It was an incredible learning experience, full of fun, but lots of tension too. Some choristers were very competitive so I was always on guard, trying to keep peace with everyone. Although my speech was more shaky and abnormal at times, I still managed to sing well and do my part. However, after a few years, I became bored. Singing grand opera wasn’t something I really related to. It wasn’t me.

Additionally, performing night after night and rehearsing so many long hours was taking its toll. Frequently, my throat felt tight and painful, and it worried me that I might be doing harm to my throat or my voice. I was constantly tired, and that alone made my speech worse. It was fun to have fans greet me at the stage door, or to meet famous stars and attend lavish parties. But, with my speech problem and lack of interest in the art form, I stopped practicing as much. I began wondering, “What else can I do to make myself happy?”

I remembered one morning when I was a little girl. While sitting on my parents’ bed, Mommy put on a record of Spanish guitar music. Mom was a professional ballerina and danced a little fandango around the bedroom for me. I was enthralled by her performance as well as the music. The Middle Eastern sounds reminded me of what I heard at Bar Mitzvahs or whenever I went to temple. This music was a part of my culture; it was a part of me.

In 1983 I auditioned again for the opera chorus, but it came as no surprise when I wasn’t chosen. I had barely practiced classical singing since I began studying Flamenco six months earlier. From the moment I heard the guitarist’s strum at my first Flamenco lesson, I felt a connection to something that mattered to me.

With my musical knowledge, I quickly understood the complicated rhythms of Flamenco. After a few years of studying dance, I began to seriously study the singing. Although my Spanish was weak, I worked hard to learn the pronunciation. I progressed, learning the meaning of every phrase and how to sound more authentic.

Most aficionados agree that singing is the hardest thing to do well in Flamenco. Always up for a challenge, this only made me pursue it with more passion. I went to Spain numerous times to study and by the late 1980s I was performing Flamenco as a singer/dancer. A lot of people liked my singing, but when I spoke they continued to ask, “What’s with your voice?” Nothing had changed except that I was older. I was singing very well while I still struggled to speak.

When I was forty-eight I decided to stop performing. I loved it, but I was exhausted after each show. Naturally, it was more physically challenging as I aged, but I noticed that I had almost no speaking voice for a week, or even two weeks after a performance. The healthy volume that I once had was gone. I worried that my voice, in its entirety, was going too.

I did well the evening that I gave my last Flamenco show at a small club in San Francisco. The audience applauded, and I left the stage with pride. Afterwards, though, there was a tremendous void. Expressing myself to others through music was over.

As I caught up on rest, I noticed that my singing and speaking voice remained weak. I had trained with professional singers who had studied voice for years, but none of them ever suggested what I could do to strengthen mine. All anyone ever said was “Try to relax.”

It was only a few years later, when I was fifty-one and finally diagnosed with a severe case of spasmodic dysphonia, that the irony of being able to sing well while being unable to speak made any sense. I learned that the laryngeal muscle spasms that cause the breaks in my speech are usually absent while singing, laughing, whispering, or even speaking at a higher pitch. No one has confirmed this, but I believe these activities, unlike speech, force us to breathe in more deeply from the diaphragm. In turn, this opens the airway and produces sounds that are smooth.

Although I had less volume, I could still sing before I got the first treatment for my voice disorder. At the time, one of my speech doctors said, “Iris, if this goes well, we’re hoping you’ll be able to speak fluently again. However, you won’t be able to sing. Do you still want to do this?”

In the moment, I actually hesitated. Even after a lifetime of praying to be able to speak with any kind of normalcy, my response of “Yes” didn’t come easy. The idea of not being able to sing was devastating. It was my identity, my lifeline for the last forty years. Still, I thought, “Even though I wanted to, I could never sing my way through life. I was lucky to have sung as much and as well as I did. I have to let it go and move on.”

More than eleven years have passed since I put my singing voice to rest. I spent years grieving and mourning its loss. The power and four-octave range are gone, but at times there are remnants of it. Once in a while I can quietly sing within an octave. With the passage of time, I am now able to think back on it fondly, with gratitude. Often, when I felt so lost, it was singing that gave me hope and a connection. It gave me a voice.

Others Like Me

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.

Treating My Speech

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.

1. Speak slowly. Not only does this make one more mindful about speech production; it regulates the breathing and promotes relaxation.
2. 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.
3. 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)
4. 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.
5. 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.
6. 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.
7.  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.
8.  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.”
9.  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.
10. 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. 

A Diagnosis and Treatment

My appointment was a day away. The two doctors I was about to see were experts in their field. Dr. C believed I had a classic case of spastic dysphonia. As a head and neck surgeon, he performed operations and treated disorders of the larynx or voice box. I found out that he was so good that patients traveled from out-of-state to see him. The other doctor was an internationally noted scientist, voice-speech pathologist, and therapist. Dr. I focused on head and neck disorders that caused communicative problems. He was also the founder of a non-profit organization devoted to voice and speech dysfunction.

Even though their credentials assured me that these two men would know what they were talking about, I was scared to meet with them. I kept wondering, “Will they really be able to help me?”

The day of my appointment I was an emotional wreck. I needed someone in their right mind to be with me; to help me understand and remember everything that the doctors had to say. I was grateful when my sister agreed to come along.

Ellen and I met Dr. C in the office where he had diagnosed me the week before. We were both at ease in his presence. A few minutes later, the other doctor came bursting into the room. Dr. I was moving and talking quickly, and I felt a little intimidated as I spoke with him. It wasn’t his high energy that threw me off, but the fact that I could see him listening to every little inaudible grunt I made.

Dr. I asked me to repeat the same things I read for Dr. C. But then he asked me to pronounce additional sounds, like a long ess  followed by an ah. I tried my best, but my speech was at its worst. I croaked out something like ssssssss-ah. In my mind, I failed miserably. Yet, for the first time in the last forty years, this was a success because it gave both doctors the confidence to positively confirm Dr. C’s original diagnosis. Dr. I said, “I agree. Iris, you have a very severe case of spasmodic dysphonia.”

If I could have spoken, I don’t know what I would have said. But shock and gratitude were what I felt when I heard the confirmed diagnosis. My sister and I couldn’t stop crying. Then, about five minutes later, Ellen started chatting and some semblance of normalcy returned.

The two doctors took my mind off the present. Dr. C said, “We were really impressed that you even knew to contact us.” As I conveyed my story to them, they were shocked by the fact that my general doctor had actually remembered their papers. Dr. I said, “Oh. We assume that the majority of doctors who receive materials from us just toss them into the nearest trashcan. We figure that a lot of doctors who even know of us are convinced that we’re mad scientists. I mean, you can see where we’re working!” I looked around, and realized we were in the basement – it seemed like no one else was nearby. I laughed as I thought of these two men, who might be my only hope, forced to do their work in the bowels of the hospital.

The more I listened to Dr. I speak, it sounded like he had an eastern European accent. This made me feel more relaxed because of all the eastern European immigrants I grew up with. "What is your ancestral background?" he asked me. "I-I'm A-ashkena-azi. You kno-ow, ea-east Eu-european Jjjjjew-ew," I replied. Dr. I stood there shaking his head up and down as if everything suddenly made sense. He then explained, "They're doing a lot more research on SD right now. We think it may be triggered by stress, but spasmodic dysphonia might even be genetic in nature. There's a particular chromosome that we think might link it to Ashkenazi Jews."

My state of shock deepened, but Dr. I continued. "Ms. Stetson," he said, "you have to understand that spasmodic dysphonia is a very rare speech disorder. Once it occurs it cannot be reversed. Do you understand?" I shook my head in the affirmative.

Dr. C then spoke. "Iris," he said, “we need you to understand that you are speech disabled." There was a moment of silence, and then he continued. "You have agreed to get the injection for this. We want you to understand that this is simply a tool that will help you to be able to be fluent, but it is only a tool. Of course, you'll see Dr. I for speech therapy, but you're going to have to do the work." I continued bobbing my head up and down like a buoy in the ocean, emotionally unable to fully comprehend what had been said.

We left the Head and Neck Department and followed the underground tunnel that linked us to another hospital wing where the treatment would take place. My sister talked easily with both doctors the entire time. In a complete daze, I followed along.

The Botox injections were only administered one day a month. We had to move quickly onto the procedure since there were a lot of other patients waiting to be treated. "How-ow ma-any patients ha-ave you g-ot?" I asked. Dr. C responded, "Oh, I'd say it's at least five or six hundred now.” Dr. I then interjected, "You know, I think we have even more than that. And these injections are not cheap, Ms. Stetson. Each one is $1500 a pop.” The more information I was given, the more surreal it all felt. I couldn't believe so many people were out there, just like me.

Before we reached our destination, both doctors stopped for a moment. They tried to relax me by saying that there was a standing joke for people getting the Botox treatment. "The idea is," Dr. C began, "that after the injection, the patient's voice will become very breathy and soft. It will be difficult to speak, so all the patients’ spouses are extremely grateful to us for doing this; they don't have to hear a thing from their mate for at least a couple of weeks." I responded, "My-y hu-usband will lo-ove that." I knew, though, that if I could speak with any ease or fluency at all, I wouldn't shut up.

We entered the procedure room. Lying on the examination table, I was hooked up to a machine that resembled a computer. Dr. I sat next to me on my right, operating the machine. Dr. C stood on my left side, searching for the exact spot to inject the Botox. Images of Frankenstein began to invade my mind and I was a bundle of nerves. Still, I felt safe. This procedure could change my life completely.

As I gazed at the blank ceiling, Dr. C told me to relax. Dr. I asked me to hold my breath while I emitted high and low pitches using ah and ee sounds. Then, Dr. C made little pricks into my neck.

The machine started to make noises, filled with lots of static. The two doctors worked together to find the injection site. It took a while, but then Dr. C located the spot. He said, “Iris, hold your breath and don’t swallow”. I did as I was told. I felt a slight stinging incision slowly finding its way into my left larynx. An hour had passed and the procedure was over.

While I rested, the doctors wrote their notes and chatted more with Ellen. I could tell that she was full of curiosity and awe for these two strange wizards who had the power to change her sister's life.

I finally sat up, feeling dizzy from the procedure and all the emotions I was experiencing. Dr. C said, "Iris, you should expect to sound breathy in a day or so, though the times and effects change greatly from patient to patient. Sometimes the Botox is bad so it doesn't work, and some patients, I'm sorry to say, don't respond to the injection at all."

At this point I was relying on my sister to fill me in on everything the doctors said. I was out of it on all levels. I hugged and thanked both doctors for all the work they had done to help someone like myself. "Don't worry," Dr. C added, "the Botox went to the right spot." Then Dr. I said, "And once you get the breathiness, your ability for fluency will be there. Just call me in a week, okay? Then you can come and see me for some speech therapy. Don't worry, it'll be fine."

Ellen supported me as we walked down the long corridor to the exit. It started to sink in that, even though the Botox would paralyze one of my vocal cords and prevent it from spasming with the other one, I had to unlearn almost forty years of bad speech. The doctors had emphasized that the treatment was only a tool, but the therapy was essential to learn how to use this new tool and achieve normal speech again. Also, the therapy was essential because the Botox would eventually wear off.

My sister got me home. I was exhausted, but I couldn’t sleep. With great hopes, I sat – waiting for the treatment to take its course, and for my new life to begin.

If Only

If only. I dislike that phrase. It sounds so regretful. I try not to use it or even think along those lines much. Even when I lost my ability to speak normally as a child, I never said, “If only I could do this or that." I decided to always do what I could with what I had. But now, after finally getting a diagnosis and a name for the strange way I spoke for almost forty years, and then hearing the doctor say that I could’ve been treated for the last twenty, all I could hear in my head was IF ONLY.

I was in a fog after meeting the doctor and hearing everything. Somehow I managed to get myself home. There was Jim.

I told him, “Honey, g-uess what? Ah-I’ve g-ot th-at condition. The d-octor told me he thinks I’ve got a classic c-ase of ssss-pasmo-odic dysphonia.”

Jim didn’t say a word.

“Sss-o, I’m supposed to s-ee ah-another doctor n-ext week. I-if he confirms th-e d-iagnosis, I’ll get a B-otox sh-ot,” I continued. “I-isn’t th-is amazing?”

Jim looked at me. He wasn’t jumping up and down like I wanted him to.

I spoke again, “J-im, d-on’t you u-understand h-ow b-ig th-is is f-or me?”

“Iris,” he finally said, “I don’t want you to be disappointed. You need to wait for the confirmation, and the treatment – it may not give you the results you want.”

“B-ut,” I told him, “ah-I’ve w-aited for a n-ame and a d-iagnosis f-or ah-almost f-orty years. Wh-y can’t you be ex-excited for m-e?”

Jim hugged me. “Listen,” he said, “you know I don’t get carried away with things like you do. I just want you to be aware of what can happen, that’s all. I mean, are you sure about all of this?”

Jim’s words troubled me, but in a way they eased me too. I needed to be realistic. Dr. C. said that he believed I have spasmodic dysphonia (SD) and that the treatment doesn’t work for everyone. “So,” I thought, “maybe I need to go easier on myself. Maybe the treatment wouldn’t have worked for me. Maybe I don’t even have SD!”

The next day I called some friends to tell them my news.

One friend said, “I thought you knew what you had. I saw the show about spasmodic dysphonia years ago on 60 Minutes. I just assumed you watched it too.”

Another friend said, “Iris, I’m so sorry. You know that I have another friend with spasmodic dysphonia, but he doesn’t sound anything like you.”

I replied, “He sss-peaks in a whi-isper, r-ight?”

“Yes,” she said. “I just assumed you had something else. If only I knew. I had no idea that both of you could have the same disorder.”

There were those two words in my head again. How could my friends not have mentioned any of this before? What were they thinking?

Another day passed. I was angry with myself and with my friends, but I had to be honest. What was my part in all of this? Did I not talk with doctors about my speech in the last twenty years? Did I make it hard for my friends to approach me about my voice? I always thought that doctors and my friends would tell me anything.

I knew that I didn’t completely turn my back on doctors. However, it now occurred to me that I had been talking to the wrong kind. I always spoke with my general practitioner and assumed that he knew everything. I needed to stay in touch with speech specialists, but I never understood that until now.

And, honestly, I didn’t share everything with my friends. I cried a lot about my speech in private, and I only shared that part of myself with a handful of people. As the years went by, most of my friends and family didn’t see my sad side; at least I hope they didn’t. I didn’t tell them about some of the people I met — people who laughed at me, mimicked me, or forced a conversation or questions on me when they could see that I was struggling to force out whatever utterances I could. Was I expecting too much from my friends? Perhaps. I realized, though, that I wanted them to know everything now.

I was tired of torturing myself with what I did or didn’t do. There were so many emotions welling up in me as my attention turned to the upcoming appointment. Riddled with a mix of excitement, sadness, anger and anxiety, I had to do something to calm down. I turned to all the notes I had been writing about SD. It had been less than a month since I first heard about spasmodic dysphonia, but my notes had piled up and gave me exactly what I needed – lots of facts.

The notes from my doctor’s visit said that I have the most common type of SD. It’s called adductor and it is characterized by spasms that cause the vocal folds to slam together and stiffen. The spasms make it difficult for the vocal folds to vibrate and produce sounds, so words get cut off, the voice sounds choppy, strained or strangled, and full of effort. It is difficult to start to speak, and spasms may occur on every other word, so the speech of someone with SD can be very difficult to understand. However, the spasms are usually absent while laughing, crying, or shouting, so the voice sounds normal at those times. Stress usually makes the spasms worse. “Yes,” I thought, “all of this describes my speech!”

I read more notes that said the disorder can affect anyone, but it is rare, occurring roughly in one to four people per 100,000. SD is most common in people between 30 and 50 years of age. I vaguely remembered hearing this on the radio, but it made me very sad to think how rare my case was since it began when I was only twelve years old.

“Yes, this is all definitely me,” I thought. “And it’s okay to feel sad. Now that I’m finally getting to the truth, it’s okay to be honest about what and how I feel.”

Filling myself up on facts was the best thing I could have done. With the appointment quickly approaching, I was feeling calmer and much more hopeful that my diagnosis would be confirmed and I would get the treatment. I could barely think beyond the diagnostic confirmation, but I found myself daydreaming with the use of those two words I so often avoid. “If only this will work for me,” I thought, maybe then I will actually be able to speak normally once again.”

What's Wrong With My Speech?

The morning after Thanksgiving 1999 I was eating leftovers, and only half listening to National Public Radio. I was fifty-one. Until that time, I had no diagnosis for the way I struggled to speak most of my life, and I had never heard anyone who sounded remotely like me.

The NPR host said he was interviewing Diane Rehm, a well-known radio host from Washington D.C. When I heard that she suffered from a speech problem, I turned up the volume.

Diane Rehm demonstrated how she sounded at her worst. She croaked out something like, “Thi-is is how-ow I-I pro-obably sou-ounded a-at my wor-orst.” By now, both my husband and I were staring at the radio. Diane Rehm’s choppy, forced, and splintered utterances sounded just like mine.

I wrote down spasmodic dysphonia, the two strange words repeated during the rest of the program. When it ended, my mind was racing. “What is spasmodic dysphonia? Is this what’s wrong with my speech?”

For the rest of the day I was glued to my computer. There were innumerable sites devoted to SD, short for spasmodic, or spastic dysphonia. I read that it was also called the strangled voice. “This must be what I’ve got,” I thought. I could never really put it into words before, but — unless I was very relaxed, whispering, or laughing – I felt like I was choking when I tried to speak.

All day and night I read. One site said, “Spasmodic Dysphonia is a neurological voice disorder that involves involuntary spasms of the vocal cords causing interruptions of speech.”(from http://www.dysphonia.org/nsda/faq.asp?nav=tre, 9/20/01)

The more I read, the more it sounded like my voice problem. I kept wondering, “If there was so much information about SD, why didn’t any of my doctors or anyone else ever tell me about it?”

December 21st fell on a Tuesday. People were busy getting ready for the holidays, but I was scheduled to meet with the speech doctor that day and it was all I could think about. My heart was pounding when Dr. C. walked into the room.

“Hello,” he began.

Like so many other sounds, it was very difficult to pronounce an H. So, I responded, “(H)i-i.” I told him my story.

“Iris,” he said, “I’d like you to say some words for me.

I nodded.

“Please say the word see.”

“S-ee.”

“Now please say the word they.”

“T-th-ey.”

“Far.”   
“Fa-ar.”

Dr. C. had taken notes. He stared at them and looked very serious. After some pause he looked at me and said, “Iris, I believe you have a classic case of spastic dysphonia. What you have is a severe speech disability.”

We were both standing, but I grabbed onto him so I wouldn’t fall down. 

“Tell me, Iris, how long have you been speaking like this?”

“S-ince I was a-around tw-elve years o-old,” I sobbed.

“How many years is that?”

“A-almost f-orty. Ah-I’m fi-ifty-o-one.”

It looked like he needed to sit down. After another pause the doctor continued, “I’m sorry you’ve suffered so long, but you don’t have to anymore. There is a treatment we can offer if you want it.”

“I-I re-ead about it. You inject B-otox or s-omething into the lar-arynx?”

“Yes. I have a colleague and we’ll both meet with you again. He’ll want to test you and confirm my diagnosis. If he agrees with my assessment, we’ll inject Botox into one of your vocal cords. It will paralyze it so that even if your other vocal cord is spasming, the cords won’t connect with each other. It’ll give you the relief you’ve been seeking all these years. The obstruction you’ve been feeling in your throat, like you’re being strangled, will be gone. I’m so sorry you didn’t know about this sooner.”

I asked, “Ow-ow long have you a-ad a-a treatment f-or this?”

He replied, “About twenty years.”

Driving home from the appointment, I was an emotional wreck. I had been in shock since first hearing about SD. Now, I finally had the diagnosis I had been searching for most of my life. I thought I would be elated, but I wasn’t. Twenty years ago my parents were alive. They were gone now and would never know that I didn’t create my speech problem; I wasn’t crazy like some people thought. The last twenty years could have been so different. Why didn’t I know about this before?

That night I remembered where I was in the late 1970s. I was working at a hospital, and often spoke with the speech department’s nurse. I was always asking if the doctors knew anything that could help me. One day, though, I just felt like I had enough. I wanted to stop obsessing on my speech, and move on.

“Na-ancy,” I told the nurse, “Ah-I’ve s-een everyone I ca-an think of. None of the-uh doctors, psychiatrists, hypnotists, s-pee-eech t-ea-eachers, meditation g-urus, e-everyone else and their bro-other a-ave a c-lue wh-y ah-I t-alk (h)-ow I do. Maybe it was s-omething m-y parents di-id, or maybe it’s s-ome c-razy q-uirk o-of my own. I d-on’t know-ow, but I ca-an’t k-eep banging on d-oors that d-on’t e-ever o-open for m-e.”

The nurse said, “Don’t give up, Iris. They’re doing a lot of research and maybe they can help you one of these days. Please don’t give up.” But, in a way, I did.