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.

           

Introduction

I am a woman, but I don’t always sound it. At times my voice has a very deep-throated quality, a bit like Marlon Brando as the Godfather, or someone you would like to call and scare your worst enemy. My raspy, breathless-sounding voice is not a desire to sound sexy, but it is due to a treatment I'm lucky enough to get which enables me to speak –– painlessly and audibly. Without it, I can easily revert back to the frog-like croakings I uttered for most of my life.

It all started when I was around twelve years old. One night, in an instant, the fluent speech I had known all my young life was gone. Finally, at the age of fifty-one, I was diagnosed and told that I am severely speech disabled.

Over the decades that I remained undiagnosed I saw a myriad of doctors, specialists, and therapists. I practiced every kind of relaxation technique I could grasp. Miraculously, I was gifted with a beautiful singing voice and became a professional singer, but I still couldn't control my speech or understand why I spoke the way I did. I prayed, I cried, I tried everything I could, but nothing helped. Friends, family, and even doctors were constantly asking, "What's wrong with your speech?"

My life without a useable voice was mostly during the telephone age –– before email, texting, and the like. School, jobs, and relationships posed a big challenge, so I usually felt alone, anxious, and frustrated. However, I realized one very important thing: I could control how I viewed my predicament. I could feel and act like a victim, or not. I could view life with a sense of humor, or not. I could try to make my life as full as possible, and I did.

When I was diagnosed, my doctors offered treatments that, if they worked, could help me learn to speak normally again. It is now over ten years since my diagnosis and I speak well most of the time. However, the treatments sometimes fail and, as I age, they may not work as well as they have so far. Also, with time, my voice may weaken and lose the strength and fluency I now enjoy. I can tell when I need a treatment because my voice loses volume, starts to crack, the register lowers, and the froglike staccato quality returns. Modern technology and my ability to use American Sign Language offers me greater communication options than ever but, in the end, I am left with myself –– sometimes voiceless, sometimes not.

I often think that my disability might be my greatest gift. It has taught me that I can find strength when I feel weak, that I can accept myself, and not only can I cope with life’s challenges, but I know how to savor every precious moment along the way. I am writing this blog to share everything I have learned and continue to learn from my unique journey. I invite you to join me. I hope you’ll come along for the ride.