Monday, August 2, 2010

From BU's grad magazine, The Comment:

I watched myself stutter for the first time in June 2001. On the TV monitor, my face contorted, my eyes looked down and my voice staggered and stumbled. I felt ashamed. As a 15-year-old girl embarking on college applications and the boys of summer, I was horrified that this thing I’d tried to stifle had a name but no specific cure. What I didn’t know, sitting in the clinic watching that video, was that asking a person who stutters to slow down and relax was like asking a blind person to squint a little to see.

I even had trouble with my name—especially with my name. You’d be hard-pressed to find a person who stutters who doesn’t have trouble with her name. Her address and phone number trigger anxiety as well. It’s said that the general population’s number-one fear is public speaking, ranked even higher than death. But to a person who stutters, I can assure you, death seems like a picnic.

My first memories of stuttering are seemingly random episodes that I don’t like to recall. Fearing to raise my hand in class. Required public speaking. Sitting in English class waiting for my turn to read aloud, knowing that the jerk behind would mimic me just low enough for our teacher not to hear.

I started stuttering when I was 6 years old. My parents never made a big deal about it. Yet eventually I realized I was constantly substituting words and worrying about whether I would be able to say things. The teasing and my confusion as to why I could not read aloud began to take an emotional toll.

 How can a seemingly small “disability” manifest so largely? Imagine walking into a party. The host comes over, extends his hand, asks your name. “Hey, I’m Ssss-ssss-sss…” “Whoa, this girl’s drunk!” he laughs. Yeah, me and the 3 million other people in this country who stutter.

Still, when my mother suggested we look into an intensive program at the American Institute for Stuttering in New York City, I vehemently refused. I didn’t want to acknowledge that there was anything wrong with how I talked. Fortunately, she persisted, and finally I agreed. I walked into the first session of the program terrified of being exposed; I’d tried to hide my stuttering for so long and had never met anyone else who stuttered before.

Stuttering took many forms that day. It was the 16-year-old boy next to me, head down, refusing to look up as he attempted to speak. The overbearing mother who mouthed her 14-year-old son’s words as he tried, to no avail, to introduce himself. I clutched my mother’s arm, desperate to leave this place where, at the time, it seemed I could not possibly belong. I was not this severe, I thought. I knew how to say my own name. It didn’t matter that in order to do so, I would pretend to be distracted, or stomp my foot, or blink my eye a certain way. When push came to shove, I could say it.

During the first week of the program, I was forced to come to terms with things I hadn’t understood. Foremost among them: Stuttering is caused by a genetic disorder, however far back in the family tree, that results in a misfire between the brain and vocal cords (or “vocal folds”). Instead of the folds opening to produce speech, as they do in fluent speakers, they slam shut, causing all sorts of desperate secondary behaviors, which range from facial contortions to pen-clicking to strange sounds and breathing patterns. It’s as natural for a stutterer to experience blocked speech as it is for a fluent speaker to talk normally. Try to talk without letting any air out. That’s the beginning. Now try deliberately to stutter. That’s how it feels for me to speak fluently: weird and unnatural.

The AIS program required us to speak without secondary behaviors from the first day, which is like asking a righty to write with his left hand. In my case, I was accustomed to using the filler word “um,” to looking upwards as I spoke to feign that I was thinking (and thus draw attention from the fact that I was struggling) and to subtly stamping my foot. I was no longer allowed to do any of this. Once, when it took me 40 seconds to say the word “confidence,” I won a prize. Stuttering was rewarded here because we were finally confronting the demon. We had to learn to be okay with it. If we were afraid to stutter, there was no hope of controlling it.

To hack away at the mental component of stuttering—tension in the vocal cords is increased by stress—we used desensitization techniques. We sat in cubicles with a phone book and called every florist, bakery, doctor’s office and gym in the city, asking what time they closed. Sometimes we were told to stutter on purpose; other times we used prolongation techniques or reformatted breathing. The group would hoot and holler in applause if someone got a hang-up. All that mattered was that we were doing the very thing that terrified us.

For so long I had cringed at things any normal speaker would say without thinking (such as the aforementioned name, number and address). Oh God, if I stutter at all, this person is going to think I’m crazy or mentally challenged. Although the severity of stuttering falls on a spectrum, you’re almost luckier if you’re more severe. If someone asks your address and you start tossing your head back and rolling your eyes, you’re more likely to get a sympathetic response than if you’re silent, praying you can get through it without looking like you’ve forgotten where you live.

The AIS program helped me enough that the next summer I signed up for the annual conference of the National Stuttering Association (NSA). There I met people who had never experienced effective therapy. It was the first time outside of a therapy atmosphere that many of us felt safe enough to stutter openly. I saw fluent speakers patiently waiting minutes just so people could finally say their names. At AIS, we’d been encouraged to use the techniques we learned to generate fluency. Here, it was finally okay to stutter.

I’ve gone back to the NSA conference every summer since for the workshops, seminars and mixers. When I was 18, I started the now-annual “College Transition Workshop” as preparation for high schoolers. As I entered my twenties I was let in on NSA jokes, such as “One tequila, two tequila, three tequila . . . Fluency!” There is a sense of humor about the disorder that stutterers embrace to lighten things up. My stuttering friends and I frequently joke about the inevitable silences that occur on the phone because it’s hard to tell when someone is silently blocking. Often we’ll wait patiently for each other when indeed no one is stuttering at all.

Even with the AIS program and the NSA seminars, my stuttering still brought challenges. A significant one was introducing myself to a roomful of non-stuttering fellow classmates at New York University. Up to that point I’d managed some combination of coughing, looking at the floor and leaving the room to pull myself through the dreaded swamp. But after all the AIS-induced awareness and NSA self-improvement and support, I felt I had to face the demon. I could no longer be in denial, letting others feel my shame as I refused to make eye contact. Instead I stood in front of the class, heart bursting, and looked at the eager faces before me. “My name is Ssssamantha G-G-Gennuso. No, I haven’t forgotten my name, but I am indeed a p-p-person who st-st-stutters.” To my amazement, no one flinched. I finished my introduction and sat down in an intoxicating haze of relief and pride.

The tools and techniques I’ve learned require constant diligence, and they are not a cure. But I’ve let my stuttering out—openly struggling on my name at parties and on job interviews, knowing the reaction that inevitably will come, only to crush it with confidence and a smile.
This isn’t to imply I’ve got it all figured out. Every stutterer has a story, but one in particular stays with me. It’s the mantra of a friend of mine from my first days at AIS, Bob K. Bob’s stuttering was so severe that he made the commitment to practice for hours every day until he achieved relative fluency. He left his old life of insecurity and self-hatred behind. But when I asked him if there was anything he missed, he said, “My stuttering, because it’s a part of me.” I thought he was crazy when I first heard him say that, but I’m starting to understand what he meant.

In loving memory of Catherine Montgomery, the first one who truly "got it"