Denial and Acceptance

In her 1969 book On Death and Dying, psychiatrist Elisabeth Kübler-Ross wrote about coping with grief. She focused on patients who were dying from a terminal illness and introduced a model of five stages to deal with that loss: denial, anger, bargaining, depression, and acceptance. Kübler-Ross also said that people might experience these coping mechanisms with any tragedy or catastrophic loss. According to her, some people may not experience any of these stages, and some may get stuck in one. When I lost my ability to speak I immediately tried to cope through acceptance. My mother went into denial.

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.