Giving

For anyone who is speech disabled, the holiday season can be a difficult and challenging time. It is a festive period, filled with lots of social activities and the unspoken pressure for all of us to be “merry.” However, if one can’t fully participate because they have no voice, or the voice is weak, painful to use, or limited in its functional ability, the holidays can be a lonely time.

Limited for decades by my inability to speak normally, it took me a long time to learn how to have fun during the holiday season. I used to dread it, feeling anxious and worried about each social engagement. I was always preoccupied with my lack of a normal voice and, because of this, I completely missed the beauty of the season for years.

Growing up, almost everyone I knew was Jewish. My sister and I received presents during Hanukkah and even on Christmas morning. Our observance of Hanukkah taught me about my heritage. It gave me a deep sense of family and the best that it represents. However, my parents still hosted a large gathering on Christmas day (to celebrate my Uncle Irving’s and Aunt Sophie’s birthdays), but I had very little understanding of Christmas. As a child, I only knew that the late fall and early winter meant there would be lots of big family get-togethers and some gifts.

I didn’t know anyone who celebrated Christmas until I was around eight years old and became friends with Christina Olsen. The Olsen family was one of the few on our block who weren’t Jewish. I loved going to their house all the time, but it was a special treat during the Christmas season. It wasn’t so much about their beautifully decorated tree and the smell of freshly baked cookies in the air; it was about the feeling of warmth and sincere welcome that greeted me when I walked through their door. The love of family in my home was certainly present at the Olsen’s throughout the year, but during the holidays there was also something else.

As a teenager I began going downtown in my hometown of Chicago to see all of the Christmas decorations. It was fun to get lost in the crowds, gaze at the beautiful window displays, and see what the stores were selling for Christmas. There were so many things I would have loved to buy, but I never got anything. What I came away with, though, was that same feeling I picked up in Christina’s house. It was a spirit that I could never quite describe. I didn’t fully understand it then; I only knew that it made me feel good and I wanted to be a part of it.

When I moved to California at the age of twenty, I had been struggling with my inability to speak normally for almost ten years. I always forced myself to be outgoing and I made many friends, lived with people from all walks of life and of different faiths. As I formed close bonds with people who celebrated Christmas, I was invited to attend their holiday parties. Instead of getting excited about all the social activities, I dwelled on my speech problem. When November approached I often wondered, “Will my voice be good enough to enjoy myself this holiday season?” Focusing on my most vulnerable area, I usually was not very merry. I was anxious. At times I was depressed.

In my thirties I began making holiday gifts for a few good friends and loved ones. I baked cookies, made homemade apple butter and other concoctions, or had people over for hot cocoa or a nice winter’s meal. I didn’t feel like I had to spend a lot of money; just give something from the heart.  As I became a more serious cook and baker, I noticed myself looking forward to the holiday season. If my voice was gone or not all there, I might still get anxious about going to social gatherings, but it didn’t bother me like before. I no longer obsessed on myself; I was too busy figuring out what I could make or do for others.

Over time I understood that the spirit of the holiday season was all about giving. That was what created the warm, cozy feeling at the Olsen’s house and the joy among the bustling crowds of shoppers in my youth. Eventually I realized how wonderful it was to give. I couldn’t help but notice how any act of helping, sharing or giving altered my mood in an instant, from somber and dark to happy and light. It was like magic.

Recognizing how much giving gave back to me, I began to look for opportunities to do it every day. I now try to give through my work, with friends and loved ones, and – often– with people I don’t even know. It can be as simple as listening to someone who needs to vent, or picking up an object that someone has dropped, or letting another driver have the right of way because they seem to need it.

My voice has been gone many times over the holidays and at other social occasions. I can feel it starting to go this year before Christmas, and I know that this will be the case for the rest of my life. However, when I focus on others and what I can do for them, I forget about what I don’t have. Growing up unable to speak, there were many times I felt almost useless. The simple act of giving has changed that. It is a constant reminder that each of us has something to offer.

If you suffer from a speech or other disability, I hope you give of yourself. Giving immediately connects us to others, and creates a sense of unity and belonging. It certainly is one of the best things I can do for me or anyone else. It is a gift that gives to us all.

What Should I Say or Do?

During the more than fifty years that I have lived with a speech problem I have observed many different reactions when I have struggled to speak. There have been people who acted out their discomfort in very demeaning ways, while others remained at ease, regarding and speaking to me like any other human being.

Many of our actions in life should be based on common sense, but experience often plays a big role. Based on my lifelong experience (and a dash of common sense), I have a good take on what can hinder or help anyone who feels awkward with someone who is speech disabled. Some people have a difficult time meeting any stranger, but if that stranger stutters, stammers, or is barely able to talk, then it can become more uncomfortable and one may not know what to say or do.

In an effort to help all of us, I am listing my compilation of guidelines below. These mainly apply to the speech disabled, but many can be used with other limitations too. And, because dealing with “typical” people can often be just as (or more) challenging than dealing with someone who is not, some of my strategies are useful in everyday situations with just about anyone.

The most important thing I wish to stress is that being with someone who is disabled is like being with anyone else. I am disabled but I have the same feelings and desires that are common to all of us. I am different from many people because I happen to have something unusual going on with a part, not all, of me. That one part appears abnormal to the world at large, but the rest of me is like most people. It’s simple. Just treat anyone with a disability as you would treat yourself – with consideration, kindness, and respect.

1. Don’t fill in words or interrupt.

People who are speech disabled often feel isolated and frustrated by all the effort involved to communicate anything. Putting words into that person’s mouth only creates more of the same.

When my speech is at its worst I try to find a rhythm to help me along, but I will lose that flow and have to start and struggle all over again if I am interrupted. I don’t even try to communicate with people who do this to me, and I even ended a relationship because of it.

Instead: Be patient.

Normal speakers should be aware that talking can be painful and take much longer for anyone who is speech disabled, so please wait until your conversational partner is done.

For me, any kind of frustration can trigger stress, and the stress makes my speech worse. If you are truly trying to converse with someone who is speech disabled, they must have time to speak too. Otherwise, they aren’t really part of the conversation – only a non-participatory listener (or sounding board), as I was and resented being for years.

2. Don’t tell anyone with a speech problem to “Relax” or “Slow Down.”

This tactic doesn’t help. If it worked, the person wouldn’t speak the way they do. Saying this to someone only makes the speaker more self-conscious. Additionally, telling them what to do will create more frustration and/or break the flow of speech that they are struggling to attain.

Instead: Set the example.

Over time I discovered that people who are calm and speak slowly affect my speech very positively. When my speech is bad, and even when it’s decent, I don’t want to have to compete to get into a conversation. Speaking more quietly, creating pauses in a conversation, and allowing everyone a turn is a simple show of respect.

3. Never mimic anyone with a speech problem.

Although it sounds preposterous, I have experienced this. In addition, people have winced, looked shocked, and outright laughed at me, Naturally I found this behavior insulting and it made me very angry, but over time I noticed that the people who did this were feeling very insecure.

Instead: Do nothing.

If you are someone who might show embarrassment or alarm around anyone who is speech disabled, try to keep eye contact with them and look as nonchalant as possible. Slow yourself down, take a deep breath, and – if you can -- talk to them. You can kindly (with a smile) say something like, “It’s nice to meet you.” It’s much better to do as little as possible, or nothing, with someone who may be feeling vulnerable – just like you.

4. Don’t focus on someone’s disability.

For many years I felt that my inability to speak normally was my weakest link. I obsessed about it and felt very self-conscious. If anyone focused on my voice, it just added to these feelings.

I once worked with someone who only brought up my speech problem when he saw me. I hated it so I tried avoiding him as much as possible, until one day when I learned that he had a health problem. I tried to raise this topic with him, but I could see that he didn’t want to talk about it, or anything else about himself. Eventually we stopped speaking to each other altogether.

Instead: Talk about the problem, not the person.

If possible, try to discuss the problem. The trick here is not to turn it into something personal, but more of a topic of conversation.

When I first told my husband-to-be, “I have a hard time talking,” he responded by saying, “I could tell. It’s not important to me, but how do you feel about it?” This approach totally relaxed me. His intent, energy, and the tone of his voice were so considerate that I didn’t feel like we were talking about me, but more about the problem itself.

5. Don’t criticize or attempt to correct.

Unless you are a speech specialist, do not do this with anyone who has difficulty speaking.

Nowadays I speak almost normally most of the time. However, in the past when it was almost impossible to communicate, I used "uh" or "um" a lot before I tried to speak. I consciously avoided saying certain words or consonants because they were so hard to produce, and I substituted a lot of words for the ones I really wanted to say. I spent a lot of time and energy setting up my speech to facilitate whatever communication I could offer. If anyone drew attention to it by criticizing or correcting me, it immediately made me angry and even more self-conscious and nervous than I already was. In the end, it was that much harder for me to relax and utter a single intelligible sound.

Instead: Be considerate. It’s okay to say you don’t understand.

If someone is struggling to speak and you don’t understand them or like the words they are using, I suggest that you slowly and, as casually as possible, say something like, “I’m so sorry, did you say ____?” Or, did you mean to say ____?” This way, you are letting the person know that you don’t want to speak for them, you’re interested in what they have to say, and you’re offering them a short response of Yes or No -- something I always appreciated when I could barely talk.

6. Don’t diagnose.

During the forty years that I remained undiagnosed I met many people, even strangers, who were perfectly happy to tell me what was wrong with my speech. Although I never once asked for their opinion, they gave it as if they were experts. However, not one of them was a doctor or in a position to make a blanket statement about the condition of my voice.

Once someone at a party asked me (when I was in my thirties) if I had a stroke. I told her, “No,” but she was convinced that I needed to see a neurologist. Others said, “You must be sick. You really sound it,” and lots of people unabashedly blurted out, “Oh, you stutter. That’s what’s wrong with you.”

I always suspected that all the free diagnoses I received were wrong, and I was right. In the end, the only thing I got was a strong dislike for the messenger and the firm belief that no one, except a specialist, should be diagnosing anyone who is disabled or struggling with a physical problem.

Instead: Share your knowledge.

If you’re reading this blog, you are likely either speech disabled or know someone who is. It’s our responsibility to try to help others, so please share this blog and any other factual knowledge you may have. When I meet someone that I suspect is speech disabled, I say something like, “It sounds like you may be speech disabled like me.” Then I continue to talk with them about my disorder, my blog and its contents. I always urge them, if they’re not already doing so, to see a speech specialist.

If you are not disabled but find yourself with someone who is, you may want to say something like, “Please excuse me, but it sounds like you may have a speech problem.” Then you can continue by telling them about this blog, or your friend or loved one. People with a communication handicap often feel very alone, so the fact that you are reaching out to them and openly discussing the subject is extremely beneficial. Your interest and display of kindness will be greatly appreciated.

7. Don’t blame.

There are some disabilities that may be caused by an accident, but no one is out to create their own speech (or other) disability. There’s no need to be cruel with someone who is already feeling out of control and struggling with a limitation.

Instead: Adopt a positive and compassionate attitude.

There has been an enormous problem of prejudice and negative attitude towards the disabled for centuries. However, since more people are better educated today, and more are exposed to different cultures and experiences, the time is ripe for change.

I believe that perspective is key to dealing with everyone and everything, so I strongly urge all of us to toss out any labels or preconceived ideas we may have about the disabled. Wiping away old notions will give anyone the chance to have an open and positive frame of mind. That approach is the best – it can only help to change the norm, better ourselves, and our world. 

Coping with Loss

Over the four decades that I went undiagnosed, lots of people were perfectly happy to tell me what the problem was with my speech. Many said, “You stutter.” Some said, “You’re nervous. All you need to do is relax.” And, one person very close to me said, “You’re crazy! You’ve created this monster!” My gut feeling told me that none of these people knew what they were talking about (and they didn’t), but it still hurt. I didn’t want to be labeled.

When I finally got an official diagnosis in 1999 I was incredibly grateful. Yet, when my speech doctor said, “Iris, I want you to understand that you are severely speech disabled,” I had numerous reactions. My first thought was, "Good. I’m relieved. There’s actually something wrong physically, so it’s not in my mind. I’m not crazy!” But, I also thought, “Disabled! Is that really what I am? Is this my new label?”

According to http://www.merriam-webster.com/dictionary, disabled means “incapacitated by illness or injury. Also, physically or mentally impaired in a way that substantially limits activity, especially in relation to employment or education.” My speech problem never made me feel incapacitated and, even though it affected my employment a lot, impaired didn’t quite fit either. When I thought about it, only one word came to mind. Loss.

When my abnormal speech first emerged as a pre-teen I felt a tremendous loss but I didn’t know what to do about it. My moral support came from a handful of my closest friends and family. My mother had a terrible time dealing with my dysfunctional voice, so the word “problem” wasn’t even used in our home. People didn’t see medical specialists in the 1960s, and no one accurately knew of a name for the way I spoke. The loss of normal speech turned my life upside down, but from the moment it began I knew that all I could do was try to cope.

Even though I was only twelve years old, losing my normal speaking voice was mostly about practicality. I still had to get out of bed in the morning and face the day. I had to go to school, hopefully find and keep a job one day, have a social life, sleep at night, and be at peace when I saw the face staring back at me from the mirror. I had to figure out how to go about living my life while operating at a loss.

Without a diagnosis, I obsessed constantly on my voice. I kept trying to find ways to control it, but nothing worked. Then, during my teens I realized that there were other things I could control and change. I couldn’t change how I appeared to the outside world when I struggled to express myself with my unintelligible utterances, but I could adjust my attitude about it; about myself. And, in changing my attitude, I could change how I appeared from within.

My attitude slowly improved, but I still obsessed on what I considered my weakest link. At the age of twenty I decided that I needed to work harder on myself so I began a daily ritual. Looking in the mirror each morning, I forced myself to focus on my strengths. This took honesty and it was hard because so many negatives kept getting in the way. I saw all kinds of things about myself, besides my speech, that I didn’t like. I thought, “I’m judgmental; I can be overcritical; sometimes I’m too serious; and I’m not always patient.” Worst of all, though, I saw how hard I was on myself.

Over time my practice helped me to become more mindful. When I thought anything negative, my mind’s eye pictured myself sweeping the thoughts away. Slowly, I became more positive, enjoyed life, and learned to be easier on everyone, including myself.

Humor helped tremendously too. Instead of seeing things with a serious viewpoint, I adopted a lighter, more objective approach. In time I even began to smile endearingly at some of the frailties and shortcomings inherent in all of us. And, everything became much easier when I started to remind myself that we are all just human.

When I first began to work on myself I thought my lot in life was so small. I didn’t see that I had anything going because all I thought about was what I didn’t have. Looking back, I can now see how much I was given; how much more there has always been to me beyond my physical voice. Today I no longer have a problem referring to myself as speech disabled. The sting that labels once carried for me is gone.

It’s more than ten years since my diagnosis and the start of my treatments. I’m extremely fortunate to now have decent speech most of the time. I used to think that if I could ever speak again, only loving words would flow from my mouth. Unfortunately, I’ve shocked myself many times for not living up to this unrealistic image. Yet, this reminds me that I’m human, or – as I like to call myself -- a work-in-progress. It also reminds me that I’ll always need to work on trying to become my best. I know that as long as I’m alive, my internal work will go on.

Since I started getting treatments, my voice has never been as bad as it was before I was diagnosed. However, there are times when it reverts back to a shaky and splintered form. My sadness surfaces when this happens, but it is usually short-lived. I know that, no matter what, I’m okay and I’ll find a way to cope. Often, what helps the most is reading what others have written about their struggles. One of my favorite works is William Ernest Henley’s poem, “Invictus.”

In Latin "Invictus" means unconquered. Henley’s work refers to his fight against bone tuberculosis. He contracted the disease as a boy and within a few years it spread to his foot. This was in the 1860s when physicians could only save him by amputating his leg below the knee. It was amputated when he was seventeen. In spite of this (and I tend to think because of it), Henley led a full life until he died at the age of fifty-three.

Henley couldn’t control the disease or its progression, but he later wrote his inspiring poem about it. His words gently remind me that whatever loss I feel, and however weak I think I might be or appear on the outside, I am still strong within.

Invictus
“Out of the night that covers me,
 Black as the Pit from pole to pole,
 I thank whatever gods may be
 For my unconquerable soul.

 In the fell clutch of circumstance
 I have not winced nor cried aloud.
 Under the bludgeonings of chance
 My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.”

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.”