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.
