It began in 1960 when I was twelve
years old. My mother, my sister Ellen and her best friend Ele were with me on
that warm summer evening when I lost my ability to speak. We just finished
dinner and sat talking with each other. I was on a stool, a few feet from the
table where the three of them sat. In the middle of our conversation I started
to say, “I”, but an obstruction at the base of my throat prevented it. I kept
struggling to say that one sound, but all I could utter was a croaked-sounding
“Ah.”
My face must have been in a panic.
The girls, about fourteen years old at the time, looked confused and worried.
They stared at one another with questions on their young faces. Mommy jumped up
and started screaming. “Iris, what’s wrong? What’s the matter?” She repeated
herself over and over again, but I couldn’t respond. She looked mad, and her
face was practically in mine. I kept opening my mouth to talk, but I couldn’t
get a word out. If my life depended on it, I couldn’t speak. Soon, all three of
them were talking and yelling. I began to cry and it was only then that some of
my normal speech returned.
After months had passed, the same
pattern repeated itself (which I remained unaware of for many years). My throat
felt tense most of the time, but if I was forced to speak it was worse. In the
beginning of my loss this happened mostly with my mother. When she pressured me
to speak I’d open my mouth and the bottom of my throat felt blocked so I
couldn’t get any words out. I usually broke down at some point and began to
cry. Then I could feel something loosen in my throat and I could miraculously
speak a little again.
Within a year my speech had
noticeably worsened. It was choppy and lacked any kind of normal fluency. Mommy
still kept asking me, “What’s wrong?” Then, after awhile, that turned into
“What’s wrong with you?” She repeatedly asked me, “Why can’t you speak?” “Um”
was about the only thing I could say without feeling any pain in my throat, so
I started to respond with “um” at the beginning of whatever I tried to utter.
Mommy then responded with, “Why are you saying um so much?” If I could have
spoken without any difficulty, I would have told her that trying to explain
myself when my throat felt like it was going to snap was beyond my
capabilities. Of course, I couldn’t tell her a thing. I couldn’t speak and I
had no idea why. For whatever reason, Mommy refused to see that.
My new speaking voice was mostly
unintelligible. When I tried to use it I could feel my whole body trying to
push out a sound. It was physically painful for me and I know it wasn’t fun to
watch either. Yet, Mommy forced me to speak at the dinner table every night.
Every time I tried and failed there was silence. After a few moments she would
add, “Why are you doing this? I think you’ve created this. You need to stop
it.” I couldn’t respond, but I usually wound up crying and the pattern
reappeared.
During all of this my sister
remained calm and supportive. My father often didn’t say much. Sometimes he
tried to end Mommy’s interrogations, but she wouldn’t stop. The worst occurred
one night when she blurted out, “I think you’re crazy!”
Most of the confrontations with my
mother around my speech happened while I was in high school, a difficult time
anyway. When I was sixteen I saw a speech doctor, but only because my wonderful
high school French teacher intervened. The doctor didn’t do anything and
thought I was fine, so Mommy decided I was too. Only, my speech wasn’t. It was
around that time that she began saying, “Iris. I think this is just a phase
you’re going through. There’s nothing wrong with your voice; I’m sure this is
something you’ll grow out of.” With this in mind she came up with the idea that
my speech would improve if I answered all the phone calls to our house.
When the phone rang I almost
flinched. I hated it and already knew that I would fail each time I tried to
use it. I can recall picking up the phone many times and hesitantly saying,
“e-ello.” My throat felt frozen and it was impossible for me to make an H
sound. On the other line I’d frequently hear, “Cat got your tongue?” or “What’s
with your speech?” I couldn’t say much beyond, “Ah-ah d-on’t kno-ow.”
As time passed I got more and more
angry with my mother. I had been so close to her before my speech affliction,
but her denial about it changed that. It hurt each time I saw the look of doubt
and disappointment in her face when I couldn’t speak, but I became weary of her
judgments. Fortunately, because I had a fighting spirit and an inborn belief in
myself, I began to question her. I knew there must be something else going on
with my voice, so I could never understand why she didn’t too.
I have shared my story
with many Deaf adults who grew up in households where no one learned sign
language. When I heard their stories, they conveyed the same confusion and
sadness that I felt for so many years. One young Deaf woman signed, “I had to
learn how to lip read when I was little. I know a lot about what other people
in my family think, but they hardly know me.” Another acquaintance told me, “My
mother has never accepted the fact that I am Deaf. It’s broken my heart that
she refuses to see who I really am.”
My mother died years
before I was diagnosed at the age of fifty-one with a severe speech disability.
The moment I was diagnosed I immediately thought, “I didn’t create my inability
to speak. I’m not crazy like Mommy said.” I would have given almost anything to
talk with her that day. More than anything, I wanted Mommy and any parent of a
child who has some kind of disability to understand that their child needs to
be accepted for who they are, no matter what.
Losing one’s ability to
speak is enormous, but it or any other limitation doesn’t have to lead to the
loss of those they most need and love. If you are close to someone who is
speech disabled or afflicted with a notable loss, I hope you embrace them for
all that they are. Accepting the reality of another’s situation creates peace.
It doesn’t mean that anything will ever change when it comes to that loss. It
means that those afflicted will feel loved, and they will not have to meet the
challenges of that loss alone.
