Earlier this year, a friend of mine wrote out his story and posted it on his blog. It was authentic, reflective, and generally just a joy to read. He told me it was therapeutic for him to write it and suggested I do the same. In honor of National Stuttering Awareness Week, and because I felt like it would be good for me, I decided to write my story. This isn’t the story of my entire life — that would take too many pages — just the story of me and my stuttering from as far back as I can remember it.
One of my first memories (my second, to be exact) occurred in my first grade classroom. I can picture the classroom perfectly and I remember exactly where I was standing. I don’t remember who I was talking to, or what I said, but I remember stuttering. B-b-b-b-b. I remember consciously thinking “Ew, I don’t like the way that sounds. I’m going to try to hide that.”
That moment when you decide to hide your stuttering happens very early for most people who stutter I think. Your experiences from that moment on usually only reinforce the belief that hiding is the right course of action. Whether it’s a store clerk chuckling at you as you speak, or an adult giving you a confused look, or even a well-intentioned family member suggesting to your parents that you “need to get help,” you’re quickly aware that you are different. And not different and acceptable, but different and broken.
So you hide. If you’re talking to a waiter and you feel a disfluency coming on (and most of us can feel when it’s coming on) you avoid saying that word — even if that means not ordering what you want to eat. When introducing yourself to someone new, you put your head down to avoid having to see their reaction when you stutter for the first time. When in the middle of a disfluency with a friend, you smack your leg to release it, shortening the embarrassment of looking stupid and uncool in front of your friend.
I did all these things for years. But what’s crazy about avoidance is that the more you avoid stuttering (actual stuttering like the b-b-b-b-b type) the more the fear of stuttering grows. And the more the fear of it grows, the more the avoidances grow. It’s a downward spiral that eventually takes it’s toll on you.
I avoided in elementary school and in middle school. But it wasn’t until high school that I made significant, conscious effort to hide my stuttering. I was new to my high school where most of the kids there had known each other since they were in elementary school together. I remember the first day of high school talking to a girl who told me, “It’s really hard to be cool if you haven’t been going here for awhile.” I wanted to be cool, of course. I was pretty cool in middle school. But in my head stuttering and coolness could not exist together. I knew of no cool people that stuttered. And I wasn’t about to try and be the first.
My mantra from that day on was “hide stuttering at all costs.” I never verbalized this mantra, it was just engrained in my head. I would act aloof, unintelligent, mean, cocky, anything was better than stuttering. It may not be clear how those things and stuttering are related so I’ll explain.
Many times growing up people (friends, teachers, parents even) would ask me questions I knew the answers to. However, I was scared of stuttering on the word, so I’d pretend that either a) I didn’t know the answer, or b) that I didn’t hear them ask the question. Sometimes if I attempted to say the answer, but knew I would stutter on the word I wanted to say, I would change so many words in my sentences that they hardly made sense. That’s (partly, at least) how people might have come to see me as unintelligent or out of it.
People also might have looked at me as mean and arrogant because I never talked to them. I presented myself as cool and confident, but I never said more than I had to say to get by. That meant I rarely started conversations with people, and when people attempted to engage in conversation with me, I was uninterested.
Another way that I coped with stuttering was to pretend like nothing mattered and put no pressure on myself. Pressure made me more disfluent. Showing people I knew the answer meant risking showing more disfluency. Trying new things meant meeting new people and exposing myself more. None of that fit in with my mantra of “hide stuttering at all costs.”
Despite all the hiding and avoidance, I can’t say I hated high school. I was relatively cool, I had a good group of friends, and the few activities I did I enjoyed. I got by my classes with decent grades and minimal effort.
I may have continued down that path for awhile. It’s impossible to really know. But one toast, at my high school graduation dinner, legitimately set in motion a chain of events that I’m not sure would have occurred had it not been for that speech.
My dad stood up at our table and said, in short, “Ben, we’ve given you everything. Now, it’s on you to do something with it.”
And he was exactly right. My parents were (and still are) incredible. They sent me to a great high school, a great elementary and middle school, they paid for my SAT tutor, they put me in any extracurricular activity I wanted to be in. They had given me everything I wanted and needed, an what had I done with it? Not a whole lot to that point. And certainly no where near as much as I could have done. They put everything they had in me and I had adopted an “I don’t care about anything” attitude.
I decided right then and there. Seriously, by the end of that speech. I was going to show them, everybody else in that room, and myself, what I was capable of in college. My parents were putting their money into my college education and I was going to put everything I had into my education as well. I was going to be “perfect.” A 4.0 in college was my goal. “I’m not naturally the smartest person in this world,” I told myself. “But I will outwork everybody else.”
I got to college, and when it came to academics, I was pretty close to “perfect.” I studied my butt off, I worked really hard, and I found that the more I tried to be perfect in school, the better I did. Hard work and trying = results. A valuable lesson that really didn’t sink in until college.
But once I realized that I could be perfect academically, I started noticing how imperfect my speech and way of communicating was. I still wasn’t showing much outward stuttering in those days (remember all the hiding), but I started noticing how often I avoided. How many times I had a joke to say but didn’t say it. How many times I wanted to contribute something to a conversation but didn’t. How many of the questions I knew in class but refused to answer.
It became quickly apparent how imperfect my speech was and more importantly, how much of my personality and potential I was stifling.
I decided if I could will my way to be perfect academically, I could will my way to perfect speech. This was a very bad mistake.
Unlike in school, the more I tried to speak perfectly, the more imperfect I spoke. The more I wanted words to come out cleanly, the less accepting I was of stuttering, and the less accepting I was of stuttering, the more I tried to hide it.
The incredible and cruel thing about stuttering is that’s it’s almost completely paradoxical. The more you try not to stutter, the more you will hold back and struggle. And the more you are willing to stutter, the less stuttering and struggling you’ll have. This might seem inexplicable, but it actually makes a lot of sense on a physiological level.
In order to say my name, “Ben”, I need to get on that “B” sound. If I think I’m going to stutter on the sound “B” and I refuse to show any stuttering, I’m going to have a hard time saying the word “Ben.” Simply put, I nor you nor anybody else can say the name “Ben” without making that “B” sound, and if I’m not willing to make it, I’m not going to say my name.
But back to the story. Refusing to accept any imperfections in my speech led to every word that came out of my mouth being a struggle. Two of my friends in college who I also went to high school with must have been shocked. In high school, I think one of my friends knew I stuttered. One. To everybody else, I was a perfectly fluent speaker. Fast forward months later and I literally couldn’t get a word out without pressing my lips together, looking at the ground, and other unnatural, secondary behaviors I tried to escape that moment of disfluency.
After my first semester of college, I knew I needed help. Anything. Literally anything I would have tried. I was in so much hell that a stranger could have tried to sell me a magic potion and I might have given it a shot.
I really can’t even begin to explain the excruciating feeling of being stuck in a block, with your face contorted, with 4,000 negative thoughts running through your head as someone stands there and watches the whole thing. “I can’t believe I’m doing this.” “I’m a freak.” “I’m totally incompetent.” “How am I ever going to have a job?” “Who possibly wants to hang out with me?” “This person thinks I’m mentally ill.” And it was like that almost every time I spoke by the end of that first semester. It was torture and I wanted to get out of it anyway I could.
My aunt suggested to my mom that I go see the Hearing and Speech Clinic on campus at the University of Maryland. And thank God I did. I remember sitting in Vivian Sisskin’s office, the head of the fluency department at Maryland who would later go on to be my therapist and mentor, and having her lay out what stuttering was and why I was doing the things I was doing. But she didn’t just explain the things I was doing that afternoon while speaking to her, she explained things I had done my whole life. My entire life to that point I had never understood why I struggled the way I did, why I closed my eyes during a disfluency, why I tapped my leg, why I pursed my lips, why I didn’t say or do certain things. Stuttering was this thing that controlled me but I had no idea how it worked.
I knew that this woman understood me like no one else did. But one thing she said really bothered me. If I wanted to be in therapy I had to be in a group therapy with other people. This was a big no.
Stuttering was my issue and mine alone. I didn’t talk to friends about it. I didn’t really talk to my parents about it. “Stick me in a room with a therapist and let me fix this,” I thought. “Then I’ll come out and see the rest of the world. No one’s going to watch me struggle through this.”
As is typical of mine and Vivian’s relationship, she eventually got her way and she was right.
The first semester of group therapy was a blur, but I remember feeling like a tortious coming out of its shell. This monstrous issue, source of shame, that I had buried and pushed away since at least that day in 1st grade and probably even before that, was slowly becoming exposed. Every inch I made out of that shell was terrifying, but so so important.
That first semester wasn’t even exposing my stuttering to anybody else. It was exposing it to myself. It was accepting that I had spent at least 13 years hiding it in various ways. It was becoming aware of all the things it did to control my life. And most importantly, it was recognizing that my stuttering wasn’t going to magically disappear and that I needed to accept that.
That realization was especially hard. And it’s still one that I think many people don’t agree with. We’ve heard so many stories about people who stutter who spontaneously stop stuttering.
I’m very skeptical. I’ve heard people say “I don’t stutter anymore,” but I see them changing words they’re about to stutter on. I also know that I successfully hid my stuttering from all but one of my high school classmates, so I know there’s way more than meets the eye when it comes to stuttering.
Even if you can’t see someone stuttering, if they’re avoiding words, avoiding certain situations altogether, there’s a major life impact there. Everybody’s impacted to varying degrees and maybe it was the newfound perfectionist in me, but I didn’t want to not reach my potential because of stuttering. I didn’t and don’t want there to be things I don’t do because of stuttering. And I don’t want to baselessly hope that one day it will go away, because a) that’s not proactive, b) I tried that for 13 years and it didn’t work, and c) I don’t want to spend my life wishing away a huge part of me.
I could write more on acceptance vs. spontaneous recovery but I’ll get back to the story.
My next few semesters in therapy saw bigger gains and bigger changes. One area of change was talking in class. My first four semesters of college I didn’t participate in class once. That’s not an exaggeration. Not a single time.
I worked with one of my clinicians at Maryland and developed a plan to break into the “participating in class” world. I was going to start by giving a one or two word answer in a single class (and praying the teacher didn’t ask me for further clarification.) I remember the class and I’ll probably never forget it. It was a discussion session of a “History of the Jewish People” class. The question was asking for a specific Jewish religious book. No one raised their hands. After a couple seconds of silence I decided this was my time. I raised my hand, got called on, and stuttered my butt off on a single word. “Tanach,” I think it was. The class and teacher were fairly surprised. Here was this kid who had said nothing the first half of the semester, and here he was struggling on a single word. I’m so proud of that moment to this day, because it was one of the scariest things I’ve ever done.
The next class I progressed to answering a question that required a two or three word answer, and from there we moved on to a full sentence. I branched out to all five of my classes and moved up to multiple-sentence answers. After about a year, I became “one of those kids” in class: The ones that always raise their hands and seemingly love to hear themselves talk. Crazy enough, I began to like participating in class. Showing that I knew the answer was something I didn’t do for a lot of my life. It was an adrenaline rush every time I raised my hand.
There were other successes too. I became very open about stuttering. My parents “got on board.” They learned what stuttering really was, how it impacted me, what I was working on at that given moment and how they could help. My sister quickly learned that anytime she wanted me to make a phone call for her or pick up something at the store she could utter the magic words “You can use it as a speech assignment,” and I would likely go.
I began to introduce myself as someone who stutters to new people. “Hi, I’m Ben. Just a heads up I’m a person who stutters, so if you hear some repetitions or disfluencies in my speech that’s what’s going on.” (I feel like that should be the text on my headstone one day.)
I did an interview with the ABC news affiliate in Washington D.C. about stuttering that aired directly after the Oscars. (And my ex-girlfriend, who I don’t think knew I stuttered, called me immediately after watching it in real time with her sorority…This still makes me cringe a little bit).
I spoke about stuttering at the National Stuttering Association Conferences and began leading a support group of people who stutter.
Looking back, the changes have been huge and important. But the most important, I believe, is that I now am more of myself.
I like to talk to people, I like to converse, I like to crack jokes. I like to talk philosophy and politics and sports. I like to express my views when I’m passionate about something. I like forming connections with people.
I remember back in high school I had a date with this girl. A mutual friend of ours asked how it went and she said “He was kind of boring. He has no personality.” I’ve told people that story many times in the last few years and they’re generally shocked. You can say a lot about me, probably both good and bad, but “not having a personality” really doesn’t fit me anymore.
And that’s an awesome thing. Not awesome the way it’s overused today, but truly awe-some. That one can go from silent and hiding to expressive and open. That my biggest source of shame can be the thing I enjoy talking about most. That the biggest challenge of my life has also given me opportunities.
I am not “cured” by any means. I still struggle (depending on the situation and how much stuttering I’m willing to show…remember, the paradox.) I still press my lips together to escape disfluencies. I still avoid saying things sometimes. But that’s not really the point. I’ve made huge gains, and remembering that is important, especially during a tough day.
This Fall, I’ll start as a student clinician at the very same speech and hearing clinic that changed my life. That’s incredible, weird, daunting, and terrifying.
I am absolutely scared of failing. But I guess “failing” is dependent on how I define failure. I will struggle speaking with my clients sometimes (just typing that sentence makes me want to run into a hole.) I might have people think I can’t do this job because of the frequency or struggle of my stuttering.
But I also know that if I come out the other end, I will change a kid’s life. There’s no doubt in my mind. And that is really my mission and goal at this point. Above all else. It’s to be the person and the support that Vivian and others were for me. It’s to help a kid come out from his or her hell and find themselves. It’s about helping someone reach their potential and get the most out of life they possibly can.
If that’s how I define “success” and “failure”, I don’t think I will fail. I think this process will help me and my clients at the same time. I’ll have to do more of this fear facing. I’ll have to practice what I preach.
So that’s where I’m at right now. More chapters of my story will be written. I have a guess of how the next few will go, but I didn’t see the previous ones coming so who knows.
I hope you got something out of my story. I certainly enjoyed writing it.
Until next time, Happy National Stuttering Awareness Week.