About the Authors
|Dr. Claudia Bryant was an Assistant Professor of Political Science and later the Assistant Director of the Office of International Programs and Services at Western Carolina University in Cullowhee, North Carolina (NC, USA) for 11 years. During that time, she worked closely with a Communication Sciences and Disorders (CSD) colleague to overcome chronic laryngitis that was significantly impacting her personal and professional life, especially her teaching. From that experience, she gained an appreciation for what Speech Language Pathologists (SLPs) do; only now does she realize how truly life changing their work can be.
Claudia has been a caregiver for a relative with Alzheimer’s disease for five years. Through that experience and as a result of her own experiences as detailed here, she has become an advocate for people with dementia and its associated effects. She is a volunteer with CarePartners Adult Day Services in Asheville, NC and the Alzheimer’s Association.
Claudia resides in Asheville, NC (USA).
|With support from: David A. Shapiro, Ph.D., CCC/Speech-Language Pathology, is a Fellow of the American Speech-Language-Hearing Association, a Board Certified Specialist in Fluency and Fluency Disorders, and the Robert Lee Madison Distinguished Professor at Western Carolina University (Cullowhee, North Carolina, USA). For 38 years, Dr. Shapiro has taught workshops, provided clinical service, and conducted research on six continents. His book, Stuttering Intervention: A Collaborative Journey to Fluency Freedom (2011, PRO-ED, www.proedinc.com) is in its 2nd edition and continues to find a wide international audience. Dr. Shapiro is actively involved in the International Fluency Association (IFA) and International Stuttering Association (ISA), received IFA’s Award of Distinction for Outstanding Clinician, and served as IFA’s President from 2012-2014. Dr. Shapiro is a person who stutters, has two adult children with his wife, Kay, and lives near the Great Smoky Mountains National Park.|
This is my story as a person who stutters. I haven’t stuttered long. It began nine months ago when I was 43 years old. It resolved two weeks later. Yet that experience has permanently impacted the way I view the world, people around me, and myself. I am sharing my story to help with my own recovery, with the hope that others may benefit from it as well.
On November 3, 2014, surgeons removed a tumor on my auditory nerve that was pressing into my brain stem. Because of its location and size, there was no question – it had to come out. Although I learned the risks, I was not prepared for the stroke that I experienced while recovering from surgery. My world changed within moments.
When I awoke from the surgery, I immediately realized that I was unable to recall words. “Oh my God, What is happening to me?” I thought. I remember trying to ask one of my relatives to hand me something. I said, “Give me the…,” but then couldn’t think of the word. I knew what it looked like. “Shiny,” I chimed in. And I knew what it was for. “For stabbing a tomato,” I said. I was so relieved when my family guessed, “Oh, you want the fork?” I could then eat the salad brought for me on the food tray. Eventually I regained word retrieval abilities and remembered most of the words I wanted to say. However, the story doesn’t end here.
Within 10 days of surgery, fully able to recall words, I began to stutter. I first noticed it one evening with a friend. I had been fine all day but became fatigued while trying to converse. While noticing that my speech was becoming disfluent, I remember saying, “This is new…and w-w-w-weird!” Soon I realized that by the end of the day and any time I had not gotten adequate rest the night before, my stuttering worsened. In fact, that became a cue to my visitors that they needed to leave. Even though I told them that I felt fine and didn’t want them to go, my speech invariably gave me away.
Something was happening TO me. Thankfully, I knew the words I wanted to say, but it was as if I said them in slow motion and one word at a time. “Hello” became “Hhhhheeelllllllooo”. It was hard to express my joy when family, friends, and colleagues visited me – “Iiiiii’mmm … sssooooo … gggglllllllaadd … ttttooo … ssssseee … yyyyyyoooouuu.”
To cope with the frustration and humiliation of not being able to talk, at first I avoided talking at all costs. Soon I realized that wasn’t a reliable strategy. It didn’t take long for me to remember that my friend and former colleague, Dr. David Shapiro, is an expert in the area of stuttering and a person who stutters. Through emails, phone calls, and visits, he explained that my speech resembled “neurogenic-acquired stuttering.” It was a different pattern than what typically is referred to as stuttering. Essentially, it was a side effect of my surgery or stroke and he offered me helpful guidance. From the very first conversation, he made me feel at ease with what was happening instead of being embarrassed by it. I knew he could relate precisely to what I was experiencing, and if there was anyone NOT to be ashamed in front of, it was David. Talking with him gave me confidence and made me feel more comfortable talking with other people as well. He pointed out all that I was doing well. He explained that he observed so much fluency in my speech, despite the disfluency that seemed so obvious. He told me, showed me, and then directed me how to speak with an even rate, gentle effort, and natural inflection. These tips helped, as long as I got adequate rest. Fatigue was my speech enemy.
I received different types of treatment during the six weeks at the rehabilitation facility, all of which I found to be helpful to regain my word recall and speech fluency abilities. What was most difficult, however, was coping with my feelings – my feeling of incompetence, of loss, of inability. I often found myself thinking, “I’m smarter than I probably seem to you right now.” When shown a picture of a circle with N, S, E, and W in it, I thought, “Even a child can name that.” I knew what the object was for and even described it in detail, but the word compass escaped me. Stuttering not only triggered feelings of inadequacy; that was one of the few times I allowed anger at my situation to boil up. I’d say a few words, start to stutter, and either vocalize my frustration through a muffled scream or mumble profanities under my breath. Typically I am neither angry nor profane.
I dealt with the indignities of needing help taking a shower and going to the toilet. As humbling as it was having my food cut up for me as though I were a child, I was grateful for the assistance to be able to eat. With guidance, I learned techniques for dealing with partial paralysis, inability to read or write, visual distortion, severe migraine headaches, and extreme disequilibrium to the point that I could not walk, stand, or even sit up. To this day, I can no longer hear from my right ear or cry from my right eye. Fortunately I have friends, family, doctors, and therapists who explained the physiology of what was happening to me – in terms I could understand. They told me from my first groggy moments after surgery that I was going to recover but that it would take time – and I believed them. Their confidence – combined with my faith – gave me the strength to recover.
But the difficulty that I experienced communicating, and particularly the stuttering, was a constant source of isolation and frustration for me. The ability to communicate, the ability to express thoughts fluently and without great effort, goes to the very heart of what it means to be a human being. For a time after the stroke, I didn’t feel human. Now I do.
I am not a speech pathologist or an expert on brain physiology, so I can’t explain why this happened. All I know is that my stuttering lessened dramatically in its frequency and severity almost as quickly as it began. It was almost as if a switch flipped and I was stuttering, and then just as suddenly the switch flipped again and I was not stuttering any longer. I cannot interpret this with certainly. I suspect, however, that my stuttering reduced dramatically following a medical relapse, during which I had nearly two solid weeks of rest. During that time, I slept a great deal and had little conversation with anyone. When I returned to the rehabilitation unit, my stuttering was nearly resolved. In fact, I did not need speech therapy during the last two weeks of my stay. Perhaps my brain needed time to heal itself. Nevertheless, nine months later, I still find that sleep and rest are essential to maintain my speech fluency. Without adequate sleep and rest, I stutter.
Thoughts and Reflections
I recognize that my stuttering experience is different from that of the majority who refer to themselves as people who stutter. For me, speaking has not been a lifelong challenge. Until my stroke which led to stuttering, I took speaking for granted. I just assumed that when I opened my mouth, words would follow. In some parts of the world, stuttering is considered a curse and those affected are shunned. In contrast, I was blessed to have an entire support system that maintained eye contact with me, nodded as I spoke (whether or not they understood what I said), spoke clearly and slowly, did not rush me or make me feel self-conscious about my stuttering, offered tips on how to avoid stumbles in my speech, and most importantly continually encouraged me to talk.
I don’t recall ever being afraid that the challenges in word finding or speech fluency would become a permanent part of me. Perhaps ignorance really is bliss. Thankfully, I was not aware that some people do not recover from neurogenic-acquired stuttering. I never considered any alternative other than that I would get better; this was just a big bump in the road. And if ignorance is bliss, then misfortune is life’s teacher. There was so much that I did not understand about my body and much I took for granted. Now I take nothing for granted.
Despite the brevity of my stuttering, this experience has changed me. I have become more sensitive to the needs of those who have difficulty communicating through words. I am aware of the statistic that 90% of one’s impact as a communicator occurs non-verbally. When I had trouble conveying my thoughts through words, I learned the importance of body language. I’d shoot a crooked glance at a visitor and we could share a laugh even though no words were spoken. Some communication is beyond or without words. Now, I am more attentive to the body language of others. Words don’t have to limit communication.
This experience also taught me to be a more active listener. I now know how frustrating it is for some people to talk. I have learned to focus my attention on each person and not to miss a single thing said. I now am attentive to silence. I listen for what people are not saying.
I have become a more attentive conversationalist. When talking with a person who is more comfortable saying “no” than “yes,” for instance, I phrase my question to elicit a “no” response. These strategies are particularly valuable for me when interacting with elderly people and those impacted by various forms of dementia. Even more importantly, my experience has given me a purpose—to use my voice to speak up for people who are voiceless. I am a primary caregiver for someone with Alzheimer’s disease; my experience has made me a better caregiver and a better human being.
The vast majority of my experiences have been positive. However, when I was paralyzed and first wheeled into the emergency room, I wish the paramedics hadn’t referred to me as “a transport.” I wish they hadn’t cracked jokes and ignored me. I am a person. When my family and friends, for whom I am so thankful, visited me, I wish they hadn’t said, “Oh, you look so great.” I know that the circumstances create a tough moment and people never know what to say. I wish I could have said, “I have looked in the mirror, you know. I look like Hell.” All they needed to say is what they said, “We love you.”
I had to lose the ability to communicate, even temporarily, to understand what an extraordinary gift communication professionals provide to their clients. You are helping others regain their sense of humanity. My greatest hope is that even one clinician will read my story and apply it to his or her clients. Treat all people with respect. Make sure they know that you do not think less of them because they have a speech disorder. Be the source of hope for improvement. Prepare them for what may be a long road ahead, but keep them focused on attainable goals. Help them visualize a later stage when they have learned to cope with and overcome their obstacles. Celebrate all achievements along the way. Help clients put their experience into a larger context—how is this experience changing them and helping them grow? How might they be able to use their experience in the future to benefit others? For instance, might there be someone they can mentor? Be the rock that’s thrown into a pond that creates many ripples, and encourage your clients to be the same. In doing so, what may have been seen as a burden instead becomes a gift.
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