Different Experiences with the Same Speech Problem

Speech problems are like sizes. One doesn’t fit all. Even though I may have the same condition as you, our experiences with it might be quite different.

When my speech problem began in 1960 I was around twelve years old. In order to communicate I felt like I was groping in the dark. Since there was no such thing as text, email, or a phone application to substitute for my voice, I concocted ways to try and convey what I wanted to say. My methods were not very good.

Because I was so anxious to try and speak normally, I usually spoke too fast. I know I simply wanted to get it out and over with, but the speed made me more tense and made the problem worse.

Frequently another thing I did was to try and force out words. There were so many vowels and consonants that I couldn’t say so I made the effort to push them from my throat. When I did this I contorted my face and my whole body often became involved. Sadly, I was rarely understood and I could also see how uncomfortable it made others to watch me.

At the age of fifty-one I was finally diagnosed with a severe speech disability, almost forty years after my problem began. My doctors told me that, with treatments, I might be able to speak fluently again. However, they also said that I would need a lot of speech therapy. By this time, so many years and bad habits later, I didn’t know how to speak normally. I couldn’t even remember what it felt like, so I would have to unlearn everything I had been doing and start from scratch.

Around the same time I also began meeting other adults with my disorder, the adductor type of spasmodic dysphonia (SD). I was thrilled because I had never met anyone who had my condition or sounded like me when they spoke. I thought everyone I met would understand my situation and what I had been living with for so long, but I was wrong. 

The first thing I noticed was how calm other people with my form of SD appeared when they talked. I didn’t see anyone speak fast, contort their face, or use their body to force out words. No one looked or sounded anxious. Even though their voice had the same choppy and strangled sound as mine, their efforts to communicate were far from what mine had been most of my life.

I also heard from people online. They told me about careers they had to give up because of SD. Their voice had been an integral part of their job so they had to find other work that didn’t involve speaking. I truly sympathized with their sudden loss, but I noticed that a part of me envied the fact that they ever had their job in the first place. I wasn’t proud of myself for thinking, “You’re so lucky you got to do that job. I could never even pursue or think of doing something like that.”

The more I listened to other people’s stories and heard the responses in my head, I realized that we shared the same voice problem but were on opposite ends of it. As I looked into it deeper I became aware of a number of things.

First, I never met anyone afflicted as young as me with my disorder. Secondly, none of the adults I encountered had gone longer than two years before getting a diagnosis. And, no one seemed stressed about speaking like I always had because they were used to doing it. They had been speakers all of their lives, something I was not. Fortunately, because they had received a diagnosis fairly quickly, they didn’t have the time to form bad habits either. We shared the same speech problem, but our histories were worlds apart.

In spite of our differences, though, I could see that we definitely shared similar feelings. Even though those who were newly afflicted had access to things I didn’t have like technical devices, advanced medical procedures, information and education, they were still emotionally challenged by what always challenged me. They no longer wanted to speak much, use the phone or read aloud. Their lack of fluency made them feel isolated and spend more time focused on their loss. Suddenly they found themselves feeling anxious about work, relationships, and everything that makes up a full life. I experienced all of this, but I suspected there might be something else they were grappling with — something I considered one of the toughest things about having a speech disability. They had to accept it.

One day, when I was in my thirties, still undiagnosed with no name for my abnormal voice, I simply accepted the fact that I had to stop struggling with it. I realized that it was a part of me and I might never be able to speak normally again. I needed to stop fighting it and learn to live with my limitation as best I could. Once I did this, my anger and sadness began to wane. Even though I knew that my speech condition would continue to play a major role in what I couldn’t realistically do, accepting it gave me a sense of control and freedom to explore what I could do.

It is never easy when someone is afflicted with a speech or other disability. However, after living with my disability for over fifty years, I would advise anyone with a similar problem to come to grips with the reality of the situation as soon as possible. Once I did this it became obvious that I needed to be more open-minded and creative, and approaching life with this in mind has proven to be a great thing. It has pushed me through doors I may not have gone through, and it has set me on paths I may not have initially chosen. Accepting my speech problem has taught me how to go with the flow, and embrace and learn from whatever comes my way.