Sunday, March 27, 2011

Introduction

I am a woman, but I don’t always sound it. At times my voice has a very deep-throated quality, a bit like Marlon Brando as the Godfather, or someone you would like to call and scare your worst enemy. My raspy, breathless-sounding voice is not a desire to sound sexy, but it is due to a treatment I'm lucky enough to get which enables me to speak –– painlessly and audibly. Without it, I can easily revert back to the frog-like croakings I uttered for most of my life.

It all started when I was around twelve years old. One night, in an instant, the fluent speech I had known all my young life was gone. Finally, at the age of fifty-one, I was diagnosed and told that I am severely speech disabled.

Over the decades that I remained undiagnosed I saw a myriad of doctors, specialists, and therapists. I practiced every kind of relaxation technique I could grasp. Miraculously, I was gifted with a beautiful singing voice and became a professional singer, but I still couldn't control my speech or understand why I spoke the way I did. I prayed, I cried, I tried everything I could, but nothing helped. Friends, family, and even doctors were constantly asking, "What's wrong with your speech?"

My life without a useable voice was mostly during the telephone age –– before email, texting, and the like. School, jobs, and relationships posed a big challenge, so I usually felt alone, anxious, and frustrated. However, I realized one very important thing: I could control how I viewed my predicament. I could feel and act like a victim, or not. I could view life with a sense of humor, or not. I could try to make my life as full as possible, and I did.

When I was diagnosed, my doctors offered treatments that, if they worked, could help me learn to speak normally again. It is now over ten years since my diagnosis and I speak well most of the time. However, the treatments sometimes fail and, as I age, they may not work as well as they have so far. Also, with time, my voice may weaken and lose the strength and fluency I now enjoy. I can tell when I need a treatment because my voice loses volume, starts to crack, the register lowers, and the froglike staccato quality returns. Modern technology and my ability to use American Sign Language offers me greater communication options than ever but, in the end, I am left with myself –– sometimes voiceless, sometimes not.

I often think that my disability might be my greatest gift. It has taught me that I can find strength when I feel weak, that I can accept myself, and not only can I cope with life’s challenges, but I know how to savor every precious moment along the way. I am writing this blog to share everything I have learned and continue to learn from my unique journey. I invite you to join me. I hope you’ll come along for the ride.

11 comments:

  1. I love you tia.

    Your niece,

    Paloma

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  2. Iris,

    What a lovely piece. Thanks for opening up a voiceless world for others to hear.

    With love,
    Phylis

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  3. Very nice said.. We love you

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  4. Hi Iris.
    Blogging should be an interesting adventure for you. BTW, I tried to "follow" you, but was unable to make my request "stick."

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  5. Iris my love,

    Well said. Love the frog in the mirror and of course love you!

    Kelley

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  6. Hello Iris

    Larry sent me the link to your blog.

    It's good to "come out" and share.

    Gene Shifrin
    Columbus OH

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  7. Article from British newpaper

    Sharon Stone Mazurek, of 19 Maple Ave., is familiar with the social stigma those who stutter or have dysphonia, as she does.

    “I know a minister who gave up his ministry because preaching strained his voice. It's hard. The shame and humiliation have forced so many to give up their jobs or change their lives. The more the public knows, the better they will understand,” said Ms. Mazurek, area contact person for the National Spasmodic Dysphonia Association.

    Dr. David B. Sommer, neurologist and movement disorder specialist at Fallon Clinic in Worcester, treats Ms. Mazurek.

    He said dysphonia is “a movement disorder of the throat muscles that create voice,” and has many causes, including genetic factors, stroke or, as in Ms. Mazurek's case, neurological disease.
    “People should know that in movement disorders, voice, body and facial movement problems are not things people can control. If someone's only experience is with the seriously disabled, they might subconsciously jump to conclusions that may not be correct about someone with a movement disorder.”

    He said that in adductor dysphonia, vocal cords can stiffen, leading to choppy speech; in abductor dysphonia, vocal cords can open and leave only a whisper; and in mixed dysphonia, both can happen, as is the case with Ms. Mazurek.



    She said speech pathologists use many different treatments, tailored to the individual.
    Today's technology, including computer-aided speech, “gives nearly everyone a voice,” she said.

    Ms. Mazurek's battle for her voice began more than a decade ago, and could happen to anyone.

    She is a 1972 graduate of Oxford High School, where she played basketball and field hockey and sang musical theater. She married and had a son, then worked as a dental assistant for 30 years.

    “I began to feel odd, like I was going to fall over backward,” she said. Her hands opened or clenched without warning. She woke up in bed with her feet crossed painfully in the air behind her. Muscle spasms wracked her body.

    Doctors put her on multiple medications, which did little to help. She was eventually diagnosed with “rapid onset generalized dystonia.” A pacemaker was installed in her basal ganglia, deep in her brain, and in her bladder. Four times a year, she receives Botox injections in her back and neck to help her gain control of her body movements, and in her eyelids, to prevent her eyes from constantly closing, leaving her functionally blind.

    She also receives Botox shots in her throat muscles to enhance her ability to speak.

    “Communication is so important. We all have something to say, but some of us have difficulty saying it. I could always sing, but I had difficulty speaking.
    “I want to help all those who are suffering in silence. I want to promote awareness and let people know that there is help out there. I want everyone to have a voice.”

    For more information visit the American Speech-Language-Hearing Association at www.asha.org , or the National Spasmodic Dysphonia Association at www.dysphonia.org.

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  8. Iris!

    Thanks for sharing this with us...I truly admire your strength and courage...also looking forward to learning more about your diagnosis through your eyes:)

    Thanks,
    Kaili

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  9. Way to go Iris! You have a faithful follower here and I'm anxious to hear of your journey! Well done! Much love - Mark

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