Over the four decades that I went undiagnosed, lots of people were perfectly happy to tell me what the problem was with my speech. Many said, “You stutter.” Some said, “You’re nervous. All you need to do is relax.” And, one person very close to me said, “You’re crazy! You’ve created this monster!” My gut feeling told me that none of these people knew what they were talking about (and they didn’t), but it still hurt. I didn’t want to be labeled.
When I finally got an official diagnosis in 1999 I was incredibly grateful. Yet, when my speech doctor said, “Iris, I want you to understand that you are severely speech disabled,” I had numerous reactions. My first thought was, "Good. I’m relieved. There’s actually something wrong physically, so it’s not in my mind. I’m not crazy!” But, I also thought, “Disabled! Is that really what I am? Is this my new label?”
According to http://www.merriam-webster.com/dictionary, disabled means “incapacitated by illness or injury. Also, physically or mentally impaired in a way that substantially limits activity, especially in relation to employment or education.” My speech problem never made me feel incapacitated and, even though it affected my employment a lot, impaired didn’t quite fit either. When I thought about it, only one word came to mind. Loss.
When my abnormal speech first emerged as a pre-teen I felt a tremendous loss but I didn’t know what to do about it. My moral support came from a handful of my closest friends and family. My mother had a terrible time dealing with my dysfunctional voice, so the word “problem” wasn’t even used in our home. People didn’t see medical specialists in the 1960s, and no one accurately knew of a name for the way I spoke. The loss of normal speech turned my life upside down, but from the moment it began I knew that all I could do was try to cope.
Even though I was only twelve years old, losing my normal speaking voice was mostly about practicality. I still had to get out of bed in the morning and face the day. I had to go to school, hopefully find and keep a job one day, have a social life, sleep at night, and be at peace when I saw the face staring back at me from the mirror. I had to figure out how to go about living my life while operating at a loss.
Without a diagnosis, I obsessed constantly on my voice. I kept trying to find ways to control it, but nothing worked. Then, during my teens I realized that there were other things I could control and change. I couldn’t change how I appeared to the outside world when I struggled to express myself with my unintelligible utterances, but I could adjust my attitude about it; about myself. And, in changing my attitude, I could change how I appeared from within.
My attitude slowly improved, but I still obsessed on what I considered my weakest link. At the age of twenty I decided that I needed to work harder on myself so I began a daily ritual. Looking in the mirror each morning, I forced myself to focus on my strengths. This took honesty and it was hard because so many negatives kept getting in the way. I saw all kinds of things about myself, besides my speech, that I didn’t like. I thought, “I’m judgmental; I can be overcritical; sometimes I’m too serious; and I’m not always patient.” Worst of all, though, I saw how hard I was on myself.
Over time my practice helped me to become more mindful. When I thought anything negative, my mind’s eye pictured myself sweeping the thoughts away. Slowly, I became more positive, enjoyed life, and learned to be easier on everyone, including myself.
Humor helped tremendously too. Instead of seeing things with a serious viewpoint, I adopted a lighter, more objective approach. In time I even began to smile endearingly at some of the frailties and shortcomings inherent in all of us. And, everything became much easier when I started to remind myself that we are all just human.
When I first began to work on myself I thought my lot in life was so small. I didn’t see that I had anything going because all I thought about was what I didn’t have. Looking back, I can now see how much I was given; how much more there has always been to me beyond my physical voice. Today I no longer have a problem referring to myself as speech disabled. The sting that labels once carried for me is gone.
It’s more than ten years since my diagnosis and the start of my treatments. I’m extremely fortunate to now have decent speech most of the time. I used to think that if I could ever speak again, only loving words would flow from my mouth. Unfortunately, I’ve shocked myself many times for not living up to this unrealistic image. Yet, this reminds me that I’m human, or – as I like to call myself -- a work-in-progress. It also reminds me that I’ll always need to work on trying to become my best. I know that as long as I’m alive, my internal work will go on.
Since I started getting treatments, my voice has never been as bad as it was before I was diagnosed. However, there are times when it reverts back to a shaky and splintered form. My sadness surfaces when this happens, but it is usually short-lived. I know that, no matter what, I’m okay and I’ll find a way to cope. Often, what helps the most is reading what others have written about their struggles. One of my favorite works is William Ernest Henley’s poem, “Invictus.”
In Latin "Invictus" means unconquered. Henley’s work refers to his fight against bone tuberculosis. He contracted the disease as a boy and within a few years it spread to his foot. This was in the 1860s when physicians could only save him by amputating his leg below the knee. It was amputated when he was seventeen. In spite of this (and I tend to think because of it), Henley led a full life until he died at the age of fifty-three.
Henley couldn’t control the disease or its progression, but he later wrote his inspiring poem about it. His words gently remind me that whatever loss I feel, and however weak I think I might be or appear on the outside, I am still strong within.
Invictus
“Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.”
