Shared Stories: A Definitive Diagnosis

Shared Stories is a weekly column featuring articles by participants in a writing class at the Norwalk Senior Center. Bonnie Mansell is the instructor for this free class offered through the Cerritos College Adult Education Program. Curated by Carol Kearns

By Vickie Williams

In 2015, I was fortunate to have met Ginger Lane in my Norwalk Seniors Memoirs Class. She approached me after I read a story and asked, “Do you have dysphonia, muscles spasms, when you speak?” 

“Yes,” I responded, “sometimes.” I have suffered from a speech impediment for over 40 years. Having to read my stories out loud in class is very stressful, and my disfluency becomes more apparent. Answering the phone, having to say my name, and introductions to strangers are often my biggest challenges.  

My voice can sound breathy, broken, and scattered.  Words with the consonants S, P, V and H can be particularly troublesome.  

My conversation with Ginger was revelatory.  She also had a speech disorder, called adductor spasmodic dysphonia, where the vocal folds slam together, tighten, and stiffen. The spasms make it difficult for the vocal cords to vibrate and produce sounds.  The speech sounds choppy, strained, and strangled. 

Ginger understood not only the mechanics, but also my emotional and mental struggles to speak, especially before an audience. My shoulders relaxed and my mind was at ease when I spoke to her. 

She recommended that I consult an ear, nose, and throat specialist, which I had never done before. Ginger’s suggestion made a difference, and I was sorry I never got an opportunity to thank her for it.

I had graduated from college and was working as a pharmacist when I sought medical help for my difficulties. In the early eighties, my general practitioner diagnosed me as having a stutterer’s behavior. My world turned upside down. My self-esteem plummeted. 

The genesis of my condition was a mystery. At that time, my doctor recommended speech therapy and I followed through, never questioning if his assessment was correct. I spent $5,000 out of my pocket for one year because I did not have a stroke, Parkinson's or brain trauma, the criteria necessary for insurance coverage. 

Finding Ways to Cope

Progress was slow. I did see improvement, but not to my satisfaction. My fluency was up and down like a roller coaster. My mind was inundated with fear, dread, and terror when my speech went awry. I hyperventilated and my heart pounded fiercely when answering the phone or speaking in public places, on and off my job. 

My speech raised eyebrows. It drew a plethora of reactions. I have been subjected to questions like, “Are you drunk or on drugs?” “Are you having a seizure?” “Why are you laughing,” or “what’s so funny?”  One person mimicked me and told me I was sexy over the microphone on my job.

My intelligence was questioned and I received hostile looks. Impatience and intolerance by others showed up when my words were slow coming out of my mouth.

One doctor hung up on me, then called me back and asked if I had a speech impediment. When I told him yes, he apologized.

It was a dizzying journey. I felt like a dog unsuccessfully chasing its tail. The more I tried to control my speech the more I lost control of it. At times, I thought I was losing my mind.
Somehow I managed, never missing a day at work.  I made no excuses and kept pushing through my emotions and spasms. I felt embarrassed and lamented my faltering speech. I lost my spunk and spontaneity.

One time another pharmacist, whom I called for a copy of a prescription, asked me, “Are you high or drunk?”

My words sputtered before I got a head of steam to respond. “I have a speech impediment. I am a stutterer.” 

“Give me your phone number and let me call you back!” he demanded.

I struggled giving the number. My vocals did not cooperate. When he called back, my technician, who had returned from break, answered the phone and reiterated that I was the pharmacist and a stutterer.

His pharmacy was down the street from where I worked. I decided I wanted to let him see my eyes and realize I was not under the influence. It was a Saturday evening. I knew that his pharmacy closed at 6 p.m., an hour later than mine.  

At 5 p.m., after closing the pharmacy, I paid him a visit. I waited until he finished with his customers then approached the counter gingerly. No one was present but him and me. 

“May I speak with you for a moment,” I said.  “I am the pharmacist you spoke with earlier and you thought I was under the influence. Look me in my eyes. I want you to see I am not high. I have a speech impediment. I don’t do drugs and I am not drunk.”

I looked deep into his eyes and I did not flinch or stutter. “I don’t need any trouble or you reporting false information to the state board,” I told him. I pinched myself and asked him to pinch me. He looked stung and refrained. 

“The reason I want you to pinch me is because I am as human as you are.” His eyes widened. “It is a known fact one of the most difficult tasks for a stutterer is to speak on the telephone. When I make good eye contact, I am more fluent.”  

He stood at attention and listened, looking mystified and in disbelief.

“I am so sorry.  I misunderstood,” he apologized.

“Thank you for your time,” I replied and I walked away like a proud peacock. I celebrated singing with the radio blasting, as I drove home. It was a victory to me. I felt empowered.

While my challenges were many, I did not struggle alone. I must give a shout out to my co-workers in Downey. They were patient, protective, and professional. They came to my rescue answering the phone, sometimes explaining my speech. They showed me empathy.  I withstood frowns, doubters, questions, and haters. 

I had been struggling with this disability for almost 40 years when I first met Ginger and acted on her suggestion that I consult with an ENT specialist. I struck gold with this doctor. He listened, observed, and answered my questions. He validated my feedback and discussion of my experiences. His willingness to articulate each step of the evaluation process was reassuring

A flexible fiberoptic scope placed through my nose and down the back of my throat allowed the doctor to view my voice box while I was speaking. The spasms appeared on a monitor. 

The doctor confirmed that I suffered from a condition known as abductor spasmodic dysphonia. I was relieved to know it was not psychogenic, but a neurological disorder affecting the voice muscles in the larynx causing the widening of the vocal cords and preventing them from vibrating properly to produce sound, as air escapes from the lungs during speech.  Stress, he said, may exacerbate the spasms.

The Trial

The specialist questioned if I had a trauma or remembered a triggering event. My mind flashed back to Destrehan, Louisiana in 1975 when I was attending Xavier University in New Orleans. 

Five buses of students, including me, rode to the courthouse where Gary Tyler, a 16-year-old high school junior, was on trial for murdering Timothy Weber, a 13-year-old white boy, during an intense protest in 1974 by whites opposed to school integration.

Destrehan was known to be KKK territory, and Gary and his fellow black students were taunted with racial slurs, epithets, and hostility. On the day Timothy Weber was shot, Gary was on the bus, leaving school, when a shot rang out in the white crowd. Timothy Weber died.  

The physical evidence against Gary was very questionable – the bus driver said he thought the shot came from outside, the police searched the bus for over an hour before saying they found a gun, and later it was determined that the gun had been stolen from the police evidence room. Gary was sentenced to death by an all-white jury.

As a student at Xavier University, I had joined the Free Gary Tyler Committee. As our buses slowly rolled into Destrehan to support Gary during his trial, hard hat construction workers were lying on top of buildings with loaded guns pointed at our buses.

 A civil rights march in support of Gary Tyler in 1976. Courtesy FreeGaryTyler.com

A civil rights march in support of Gary Tyler in 1976. Courtesy FreeGaryTyler.com

The scene was daunting. I was scared out of my wits. Assigned to go into the courtroom to take notes and report to the overflow of students waiting outside, fear paralyzed me. I could not get a whisper out.  

From the day of the trial, my speech was broken. It got progressively worse, before getting better. Stress was a factor.  

My family was baffled and so was I. It was a sensitive issue. Mother looked bewildered when I spoke. I know her heart was bleeding for me. She was very patient, never critical.  

My sister Jo encouraged me to slow down when I spoke. “It’s okay, Baby Girl, you can do it.” Other family members reacted differently.

Despite all of this, I finished school, passed my state boards, and became licensed in two states. I pounded the pavement for a job and embarked on a career as a medical professional. 

Perseverance

My speech difficulties humbled me. I discovered my resolve. I walked through trials and tribulations, somehow forged ahead. I stumbled and found a way to get back up. It opened my heart to others with differences and disabilities. 

It taught me broken crayons still color. I faced the bitter and the sweet, and the bitter grew my gratitude for the sweet things in my life. 

The intolerance others mirrored was a valuable lesson. Not knowing the back-story of what others are going through leaves lots of room for misperception. I can’t fault others for misunderstanding. 

I saw improvements when I looked people in their eyes. I learned to be present, to be a better listener. I confronted my fears and trusted God. Speaking my truth and being honest made me feel good about myself. 

Journaling became a dear friend. I poured out my emotions on paper. Learning self-acceptance was a struggle.  I prayed and had no choice but to be patient with others and myself.

I became mindful of how important generosity, graciousness, and gratitude are. The three G’s have transformative power.  Many were kind and patient with me stumbling.

Ginger was a blessing, a gift, an earth angel. Fate destined us to meet. She was the catalyst to me getting a definitive diagnosis over 40 years later.  Three doctors and a language speech pathologist evaluated and diagnosed my condition in 2016.  How sweet it is to know!

What a weight lifted off my shoulders.  I am not crazy after all.  I owe Ginger a debt of gratitude. Wherever you are, Ginger, I thank you.

Final Note: Gary Tyler was sent to the Louisiana State Penitentiary in Angola, known as the worst and bloodiest prison in the country.  His case was appealed by many supporters, and In April 2016 he was finally released after 41 years in prison.  He now lives in California and is a graphic artist.  I always believed in his innocence.  “Free at last.  Thank God Almighty, free at last!” 

 Gary Tyler in 2017. Courtesy FreeGaryTyler.com

Gary Tyler in 2017. Courtesy FreeGaryTyler.com