In the treatment room was a young man wearing a suit and tie. He certainly did not look like he was having a heart attack. I checked the chart. The nursing note read that J.S. was an otherwise health 31-year old who developed chest pain after dinner that was gone by the time he arrived in the ER. His vital signs and EKG were normal.
"Hello!" boomed Stan. "How are you feeling this evening?"
"I'm f-f-f-f-ine," the young man said. He looked up at us. "Call me J-J-J-J-J.. Call me J-J-J-J.."
Stan glanced over my shoulder at his chart. "James, right? OK! How are you this evening?"
"F-F-F-F." His face was turning red with effort. "F-F-F-F-F-F-F.." Sweat was collecting around his brows. His upper lip twitched. His eyes focused on a spot on the floor. "I'm g-g-good," he finally exhaled. One of the medical students rolled his eyes; the other was busy tapping his feet on the ground.
Stan had already turned to leave. "Talk to him, make sure we're nothing missing something," he said to me. "Oh, and make sure to speak sloooowly so he understands."
By the look on James' face, I could tell that he had understood Stan just fine. I did too. I closed the door. "I'm sorry," I told James. "Let's start over. My name is Leana Wen. I'm a doctor. I'm also a person who stutters."
Hiding the shame
I haven't always been open about being a person who stutters (PWS). In fact, it took me twenty-two years to admit to myself that I stuttered and needed treatment for it. Growing up, I saw how PWS were portrayed in the media-as caricatures who were fodder for everyone else's jokes. I remember how the other kids teased this boy who had a severe stutter. The teacher egged them on, saying that he wasn't very smart, that's why he was too lazy to speak like everyone else.
I didn't want to be seen as stupid and lazy, so I become a covert stutterer, someone who hides their stuttering using tricks like avoiding words and situations. I could never ask for "water", only "a drink". "Pencil" became "something to write with". Once, when I had to give a talk on the Roman Empire, I was so afraid of getting caught on "Roman" that I jabbed a pencil into my thigh.
By the time I went to college, I became proficient at hiding stuttering to the point that I rarely "showed" stuttering in public. My professors never heard me stutter-but they never heard me speak at all. At night, I cried about all the times I wished I'd raised my hand, at all the things I'd wanted to say but wouldn't let myself.
In medical school, it seemed a cruel irony that I had trouble with the word "doctor" and had to come up with other ways to address my attending physicians. Medical jargon was harder to substitute. I was asked in a crowded lecture hall for the name of a particular parasite. With the spotlight on me, I just could not get out the word: "schistosomiasis" ("s" was a particular struggle for me).
"And they say this is the most selective medical school in the country. Why don't you come back when you learn to speak?" the lecturer taunted. That statement, like the piece of pencil lead buried in my leg, will always stay with me.
PWS never forget the moments when our shame is bared to the world. As I sat in the ER bay, James told me that he, too, was a covert stutterer. He worked as a financial analyst, and he was fluent most of the time because he was comfortable with his colleagues. Two weeks ago, he got promoted to a job with more client interaction. He felt pressure to prove himself. But the harder he tried to speak "normally", the more struggled his speech became. That evening, he was having dinner with some clients when every word became choked and forced. His chest pain developed soon after that.
Now the diagnosis was clear. It was clear to James, too. "I know what caused my chest pain," he said. "But what should I do about it?"
It took a similar high-pressure situation-leading a major medical student organization-to propel me to seek treatment. When I finally did, I realized that I knew embarrassingly little about stuttering. I had thought that few people stuttered, but actually stuttering affects at least three million Americans, or one percent of the population. Stuttering manifests in different ways: common stutter patterns include repetition (J-J-J-J-ack), prolongations, (J-aaaaa-ck) and blocking (---). Many PWS develop "tricks" that they think might decrease stuttering, such as speaking in a singsong voice and practicing strange breathing patterns. Unfortunately, the tricks don't work, and only end up becoming part of the dysfunctional speech pattern.
The majority of PWS are covert stutterers like me. Since the most common sign of their stuttering is word avoidance, covert stutterers can hide their stuttering for years. Some stay covert for a lifetime. Even if they may sound fluent, though, covert stutterers worry about their speech constantly. "Coverts are so used to hiding their stutter that they would do anything but put themselves out there and stutter," says Vivian Sisskin, a speech-language pathologist at the University of Maryland. "Fear dominates their life, from social interactions to professional choices."
This certainly rings true for me; I almost didn't apply for the Rhodes scholarship because I didn't want to say "R-R-R-Rhodes." That's why, according to Sisskin, acceptance is the first and most critical step to recovery. "We tend to think of stuttering as a purely physical problem, but there are emotional and cognitive components to it too. To address these aspects, you have to first be willing to show your stutter and stop avoiding. It's hard; not only do you have to face your own fears, you also have to counter societal stigmas."
In recent years, organizations like the National Stuttering Association (NSA) have started educational campaigns to debunk myths and show how PWS deal with their struggle. Marilyn Monroe and James Earl Jones are two actors who did not allow stuttering to hold back their very public careers. Winston Churchill didn't let his stutter stop him from saving his country, and the world. Nor did his contemporary, King George VI, whose battles with stuttering were convincingly portrayed in the Oscar-winning movie, "The King's Speech". Through the NSA, I met economics professors, NASA scientists, lawyers, consulate officials, architects, and journalists. It's striking that no matter how different our lives may be, our stories about being PWS are amazingly similar.
These efforts are beginning to open the dialogue about stuttering and encourage those who are hindered by this disease to seek help. At the end of his ER visit, James told me that nobody had ever talked to him about stuttering before. Nobody talked to me about it either. Not my parents, not my teachers, and not my friends. When I asked them about it, my friends told me that they were too embarrassed to bring it up. "It's not something we would know how to talk about," a close friend and fellow doctor said. "We just thought you get nervous sometimes," said another.
The silence and misinformation about stuttering is pervasive. In looking back at my medical school curriculum, the only time I remember stuttering being mentioned was when a surgeon made an inappropriate joke about a morbidly obese patient who stuttered. The one lecture we had on speech disorders focused on vocal cord cancer, and though it was given by a professor with a pronounced stutter, diseases of fluency were not discussed. And it's not just medical students who should learn about stuttering-shouldn't we all learn more about a disease that affects one in a hundred?
Understanding stuttering and educating others about it has become a central part of my own healing process. After I was interviewed for an article about physicians with disabilities, I received many letters from other health providers who either stuttered or had encountered patients who stuttered. I saw how important it was to be a vocal advocate to encourage PWS to seek help and change stigmatizing stereotypes.
At the end of my ED shift that night, I sat down and had a long talk with Stan. To his credit, he listened. Despite James' pronounced struggle with speech, Stan was surprised when I told him that James was a PWS-he had assumed that James had a psychiatric problem or a mental disability. He wanted to learn more, and encouraged me to give a seminar on stuttering to the medical students and junior doctors.
Acceptance comes to all of us in different ways. For Stan, acceptance means being willing to recognize and compassionately approach his next PWS patient. For me, acceptance means acknowledging that my struggle with stuttering has made me who I am. Now, I embrace my identity as a PWS, just as I embrace being female, Chinese-American, a Rhodes Scholar, and a physician. Now, when there is something I want to say, I say it-stutter or not.
For James, acceptance began that night in the ER. The next morning, he contacted the NSA; within a week, he had met with a speech therapist. A year later, James is president of his local NSA chapter and has started a mentoring program for teens and college students. He has been further promoted in his job and regularly gives motivational speeches. He, too, likes to tell the story of how a simple case of chest pain led him to treat his stuttering, and to accept and embrace his identity.
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