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.
