Gaining a Stutter, Finding My Voice

About the Authors

ISAD 2015 (Bryant portrait)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).

ISAD 2015 (Shapiro portrait)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.

My Story

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.

My Feelings

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.

Epilogue

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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Comments

Gaining a Stutter, Finding My Voice — 52 Comments

  1. Thank you, Claudia, for sharing your experience.

    I am curious: was the tumor you had an Acoustic Neuroma?

    You write that “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”. Yes, it does. And this is a great part of what the struggle of the PWS is about. And it’s very difficult to explain it to other people. You have explained this so well. Thank you.

    Hanan

    • Thank you for your comments Hanan. I appreciate them.

      Yes, it is an acoustic neuroma—benign, for which I am profoundly grateful. I think to a great degree it has been the focus on gratitude rather than self-pity that has made the difference for me. It has allowed me to be outwardly oriented and to see the commonalities with others, whether they be other people who stutter, people who are physically or hearing impaired, or those who have lost the ability to communicate because of brain disorders or injuries. One of the things to which this experience has made me much more sensitive is that people think, and feel, and hope, and dream regardless of how difficult it is for them to communicate those ideas to others. Some may be unwilling or unable to find a way around the challenges of another’s communication disorder, but in that case, they also-not just the person with the disorder-miss out on the opportunity to establish a real human connection.

      Thanks again.

      Claudia

  2. Hi ,
    Thank you so much for sharing your story. I am a student in a communication sciences and disorders program. I loved how you said “90% of one’s impact as a communicator occurs non-verbally” and how your experiences have helped you become a better, and more attentive listener. I know you had mentioned that you had treatment in which you learned word retrieval and speech fluency skills. My goal is to be a speech therapist, and I want to be the most compassionate version of myself in that position. Do you have any advice (to a future speech therapist), about strategies that I could utilize to help my clients with the emotional side of having a disfluency disorder?

    • Hannah,
      Thank you for your response. First, let me begin by telling you how much I respect you for the path you have chosen for yourself. You may end up being someone’s hero someday–hopefully many “someone’s”. On behalf of myself and the people you ARE going to help, thank you.

      As for advice, I would say foremost, be yourself and let your innate compassion shine through. The fact that you are reaching out here says a lot to me about how earnestly you are already trying to learn to do your job well. Keep that up.

      I would also encourage you to make a personal connection with your clients. For instance, if you have activities for them to complete or excerpts for them to read, try to tailor them to their interests—a favorite sport or team, a favorite place to visit, or their favorite cartoon princess–whatever the case may be. To be able to do that, you obviously have got to know if they prefer Elsa, Jasmine, or Ariel, so find out. Keep the experience as interesting as possible for your clients—remember, you are choosing to go into CSD for yourself; they likely did not choose this path, so it may not be enjoyable for them unless you make an extra effort.

      On a related but larger note, recognize that not every technique is going to work for every client or in every session. Be adaptable. If a certain exercise clearly frustrates your client or you are not seeing benefit from it over time, do not be afraid to switch strategies. I believe your clients will appreciate your recognition of their feelings and your willingness to change approaches. Maybe there is something they are struggling with right now; try it again later if success seems more attainable then.

      Set them up for success. Establish reasonable, attainable goals. Even if it means they make slow progress, regularly point out to them the extent to which they ARE improving. That will keep them motivated.

      One thing that I wish my SLP had done on the day I could not recall the word “compass” is to have acknowledged the difficulty of the situation; instead we simply moved on to something else—maybe it was not obvious how hard I took not being able to recall the word, but I took it very hard. I would have felt a lot better hearing, “I know this is frustrating, but your brain is hurt right now. It needs more time to heal.” Not only do I believe it is okay for you to say things like that, but I believe your clients will really appreciate it.

      Also, I would recommend you take a look at two pieces in particular if you have not already done so—my apologies if either or both of these have already been covered in your CSD curriculum. Dr. Jill Bolte Taylor’s My Stroke of Insight includes her list of the things she most needed in order to recover from a massive stroke. I think it would provide some useful tips for you regarding your approach with clients. Also a must-read is Joysa Gale Post with William Leith’s “I’d Rather Tell a Story Than Be One.” She is an SLP who recounts what she dealt with after she also suffered a stroke and lost the ability to communicate. She discusses what good clinicians should do, but also includes some particularly good tips on how not to behave with your clients.

      I hope you will find these suggestions helpful. I wish you the absolute best in your endeavors Hannah!

      Claudia

  3. Hi Claudia,

    Thank you for sharing your story. I’m a graduate student and found the paragraph at the conclusion of your paper really powerful. Those words will certainly stay with me as I work with clients in the future. I was wondering if you ever found yourself stuttering during the day when you did get a good night’s rest, or was your stuttering always related to how much rest you had and when you were tired?

    • Hi Lauren.
      Thank you for your comments; most of all, thank you for what you are choosing to do with your life.

      It is a bit difficult to give you a direct answer, as there were only a couple of nights when I got really deep, restful, uninterrupted sleep in rehab—between the rounds the nurses had to make, the physical pain I was in, and simply being in a different environment, it was very difficult to sleep even though I was exhausted. However, I do remember one night in particular when I did sleep exceptionally well; it did not seem to make a noticeable difference in reducing my disfluency though. It certainly made me feel better, and therefore better able to channel my frustrations when I stuttered, but I still stuttered throughout the next day just as I had been doing. I suppose one night was insufficient to make up for the sleep deficit I was dealing with at that point.

      I wholeheartedly agree with Jill Bolte Taylor’s point about the importance of sleep in recovering from her stroke. A typical day for me in the rehab facility started as early as 5:30 or 6:00, with 3 or 4 hours of rehab sessions spread throughout the day. I definitely noticed that I felt better on those days when I had several back-to-back sessions followed by a long break that would allow me to take a nap, rather than a 30 minute session, a 30 minute break, and then another 30 minute session, spread throughout the day in that fashion. That was not sufficient time to get a nap so I was tired more often than not. I would recommend that friends, family, and care providers do all they can to ensure that a person rests well when they are recovering from an illness or injury. As simple as it may seem, having my own pillow from home made a huge difference, as well as receiving a body pillow that allowed me to sleep with less pain. Friends and family should also be encouraged to say, “Try to get some sleep; I’ll still be here when you wake up.”

      Best wishes to you!
      Claudia

  4. Thank you for sharing your story; I really enjoyed reading it. I am a graduate student studying speech pathology. The last paragraph has given me food for thought as I work with clients now and in the future. From reading your story, I realize that I take my speech for granted as well. I had speech therapy as a kid and I am grateful for the services I received because it has shaped me as the person I am today. Now I have an opportunity to help people who struggle with communication and I’m really looking forward to making that contribution to society. How do you think your recovery from your stroke would have been if you didn’t have the support you had?

    • Michelle,
      What a wonderful opportunity you have now to “pay forward” the kindnesses and help you received from your therapist(s). Good luck to you!

      I truly cannot imagine going through this experience without having the support of my friends, my family, and my amazing team of therapists—about whom I cannot say enough good things. Because of the support I got from all of these people, I can truly say that I would not trade this experience for anything; I’ve gained far more from it than I’ve lost.

      My entire therapy team helped me in one way or another to regain my communication skills: two of my physical therapists helped me with eye exercises which allowed me to focus my vision and regain the ability to read; my occupational therapists worked with me to regain and control the movement in my hands which allowed me to relearn how to print, then write, and eventually to type; and my speech therapists helped me move from slow, incomplete, and monotone speech, through stuttering, to a speech pattern that I believe now–most of the time at least–no one would even realize had ever been impaired. Quite simply, they helped give me back my life. Daniel, Natalie, Elizabeth, Cindy, Kim, Travis, Kari—these are all people who have left an imprint on my soul. I’ll never be able to repay/pay forward all the kindnesses they bestowed upon me, but I will spend my life trying to do just that. My greatest wish for you is that you have the same impact on your clients.

      Claudia

  5. Claudia,

    What an inspiring story to tell! I am a graduate student studying speech pathology and it is stories like this one that reminds me why I chose to go on this path to becoming a SLP. Thank you for that. You really have such a remarkable way of describing everything that has happened to you; it doesn’t sound like a easy journey but definitely a mind-opening one that has shaped you and how you view communication.
    You truly hit all the points of what stutterers might come across of feeling-the shame and the avoidance. I am glad you had such marvelous support from family and Dr. Shapiro to help you cope with perceptions of stuttering that you felt and found strength in a hard time.
    I loved the quote:” The ability to communicate, the ability to express thoughts fluently and without great effort, goes to the very heart of what i means to be a human being.”
    I agree with how most of us probably take communication for granted, but its stories like this one that captures the gratitude we must give to all the powers we have to communicate to others, both non-verbally and verbally. I will take your words of advice you mentioned at the end and bring it into my future profession.
    Before I end my super long message(sorry), I have a couple of questions.
    1. Even though you get spouts of stuttering when you are tired, how would you feel or what would you do if the stutter had lasted in the severity you had it to begin with?
    2. If you could go back to the beginning of this whole experience, would you have done anything differently, if so what?

    Thank you,
    Nicole

    • Hi Nicole.
      Thanks for responding. And thank you for your kind words. Dr. Shapiro is as deserving of them as I am; throughout this journey, he has said to me, “You have a story to tell, and you need to tell it.” That’s what we’ve tried to do here, and I am profoundly grateful for his guidance about which aspects would be most helpful for you and others to know.

      I definitely took communication for granted. As I said in my intro, I THOUGHT from the experience of dealing with an SLP regarding laryngitis that I grasped the importance of what you do—and I do not mean to diminish in any way the gratitude I still feel towards the therapists who helped me overcome that. But this experience has been profoundly more intense. That was an annoyance that sometimes hurt my self-esteem; this really went to the heart of my self-worth and my humanity. I sincerely commend you for the path you and your classmates have all chosen.

      Honestly, I think it could have gotten pretty unpleasant if the stuttering had lasted. Pretty quickly after I arrived at the rehab facility, I got a reputation among the staff for how determined, optimistic, and pleasant I was. I question whether that would have lasted if the speech difficulties had continued. Generally my frustration and anger came out when I was conversing with friends who came to visit AFTER my therapy sessions ended for the day; I am sure it eventually would have spilled out in front of my therapists DURING the day if my stuttering had continued long term. I definitely would have wanted to continue with my speech therapy, and perhaps would have asked to increase its frequency. I think I would have wanted at least initially to remain ignorant of the fact that it might be permanent; I tend to be a “peel the Band-Aid off slowly instead of ripping it off quickly” kind of person. I think I would have needed to adapt to it a bit before I found out it might not go away. And I imagine that the frequency of the psychological counseling that all rehab patients go through in the facility where I was would perhaps have been increased as well to help me deal with my anger.

      If I had it to do over again, I would try to go into it with a more realistic view of the risks and the severity of what was going on. It was the surgery itself, and to a lesser extent, the immediate recovery from it of which I was most fearful; I thought I might be humbled and have to ask for help in the first couple of weeks. Everyone I talked to who had a similar procedure was back to a normal routine within no more than six weeks. I realize now that that contributed to me having an attitude of invincibility—“I’m too young and healthy for anything serious to happen; the possibility the doctors mentioned of these other complications developing…that may happen to some people, but it won’t happen to me.” Maybe if I had acknowledged those risks more fully, those first few days after I woke up would not have been as traumatic as they were.

      I also wish I had read Bolte Taylor’s book before I went in for the surgery. The staff at the medical facility where the procedure was performed actually expressed concern initially over the amount of time I was sleeping. Granted, as I came to understand during the period when the medical complication sent me back there, I lost much of the progress I had made in the first 10 days in rehab, because I was able to move so little. But when I consider the dramatic progress I made neurologically during that period when I did little except sleep, I recognize its importance when the brain has been hurt. I would have slept every chance I got, even if it meant having to ask for natural sleep aids such as melatonin or chamomile tea in the evenings.

      Claudia

  6. Claudia,

    I found your story very inspiring! Reading your story, as a graduate student studying Speech -Language Pathology, reinforced some of my concerns about how my future clients will feel about there speech therapy experience. Your story gave me hope that my clients will appreciate my therapy sessions as much as I will appreciate working with them. It was remarkable hearing your story and how thankful and grateful you are for having the ability to communicate. Being an active listener, paying attention to silence, and always being supportive and mindful of what our patients need to hear as you just needed to hear, “We love you” are things I will take from your reading and build into my clinical skills. Thank you for sharing your experience and reminding individuals who are struggling with stuttering to never give up because stuttering is just a chapter in an individuals life and through support and hope they can turn to the next chapter just like you did.

    Thank you,
    Nicole

    • Nicole,
      Thank you for your comments, and for all the good you’re going to be doing in your career.

      I honestly believe that good can come out of almost any negative experience. And I certainly don’t think something bad or difficult has to define a person from that moment on. This is one part of my experience so far—not one I would have sought out—but going through it has made me a better person. But it’s still only part of me—I’m a friend, and a daughter and sister, and a traveler, and a history buff, and an animal lover, and the list goes on and on. I think it will help your clients if they see their experience in the larger context of who and what they are too: baseball player; artist; a person who stutters; world’s best pizza-eater; aspiring actor; or whatever else might be the case.

      Be ready for the challenges of some people not particularly enjoying speech therapy. Even if they see the value of it and the progress they’re making – but especially if they don’t see it – it can definitely be monotonous to be in therapy long term. For instance, I had some great occupational therapists, but the nature of occupational therapy itself means that it was never as enjoyable for me as physical or speech therapy. My OTs really had to make an effort to make it more interesting for me, and to show me that it was making a difference.

      Best to you.

      Claudia

  7. Thank you so much for sharing your story, I know that I will definitely use it in the future as Speech-Language Pathologist. Your story showed me how important it is to take the time to stop and understand where people are coming from and give the opportunity to share their story. People just want to know that you care, and I often see people not taking the time to show they care. I really appreciated how much you are thankful for having the ability to speak, because I think people that can speak fluently including myself take that for granted. If we can take the time to be thankful for what we have, I think that we will be able to understand others better. Your small bout of stuttering changed your life and the way your interact with others for the better, which is encouraging to see. I thank you for being such an inspiration to myself and hopefully to others who read this article.

    Sara

    • Sara,
      Thank you for your very kind words, and best of luck to you in your career. I’m glad you and others have found my story inspiring.

      Yes, I believe it is incredibly important for people, in any role they might be fulfilling, to care for others and express their concern for one another. But as someone who was hurt and impaired, this was particularly important for me to see from my therapists at that point. It allowed me to view them much more quickly as “teammates” than I might have otherwise. Their openness moved and inspired me—whether it was one therapist showing me videos of his young child taking his first tentative steps, or another taking the time to show off the tattoos that were hidden under her sleeves and pants legs. That they were willing to share a bit of themselves with me, and expressed their concern for the life I wanted to get back to, resulted in me consistently putting forth extra effort, and enjoying my therapy session more, during any session where we were working together.

      Best wishes to you.

      Claudia

  8. Thank you for sharing your story Claudia. I’m in my final year studying Speech and Language Therapy and reading about your incredible journey has helped me to think and reflect about how I can provide the best support to any client I work with. “Celebrate all achievements along the way” – this quote will stick with me because it’s very positive and focuses on what the person can do.

    Thank you also for providing advice throughout this story. Were there any therapy techniques you found particularly useful to help with your stuttering?

    With Best Wishes,

    Dalveen

    • Dalveen,
      Thank you for your comments, and congratulations on being so close to the end of your training.

      I think your reference to the importance of celebrating achievements is vital. Whether it is a matter of celebrating that a client recalls one more word in a listing than he/she did the day before or that the person has one less block while reading a paragraph out loud, acknowledge it. It may be a long road, but help your client remember that even the longest journey begins with a single step.

      Speaking slowly probably made the biggest difference for me in terms of techniques. One of my therapists described it as “seeing the wheels turning” in my brain as I thought about what it was I wanted to say, and then actually getting the words out. And they never rushed me during that process.

      Another useful technique was to stop when I had a block and to start again after a short pause rather than continuing to try to get the word out and remaining stuck.

      Best of luck to you.

      Claudia

  9. Claudia,
    I see others who have commented on this post are also training as a Speech and Language Therapist like myself and want to thank you for sharing your experience. You have not only provided an insight into your experience but have also empowered me to progress in order to help people regain their “humanity” just as University workload was becoming a little intense. I now have a better understanding of the major impact a speech difficulty can have on a person and will consider this within my own work when I graduate. I really admire how you have truly embraced the support you have received along a very difficult journey.

    I wish you best of luck.

    • Becky,
      Thanks so much for your good wishes, and good wishes to you as well as you move forward in school. Thank you for what you are doing. May the end of the semester be here before you know it! Until then, I will wish for you endurance.

      I cannot imagine having gone through this experience without my friends and family, and my therapy team. They’ve truly made all the difference for me, and literally helped me stand on my own two feet when I couldn’t do that otherwise.

      Best to you.
      Claudia

  10. Hello Claudia,

    As a student Speech & Language Therapist myself, I found this post about your incredible journey very inspiring. In particular, I found the last paragraph very moving, & what you have shared will stay with me for a very long time.

    Thank you for sharing with us!

    Emma

    • Emma,
      Thank you for your comments, and above all thank you for reading the piece. I think it is human nature—it is certainly in my nature at least—to want to know that your suffering serves a larger purpose. If even one clinician is more sensitive to a client, if one person is more understanding of a PWS, or if one more PWS sees the light at the end of the tunnel of disfluency because of reading my story, then it was all worthwhile.

      Best of luck to you in school and as you move into your career. Thank you for what you are doing with your life!

      Claudia

  11. Hi Claudia,

    Thank you for sharing such an incredibly inspiring story. I am currently studying to become a Speech and Language Therapist and have found your experiences to be very insightful and eye opening.

    I agree with you that many of us take our ability to communicate verbally for granted, I know I definitely do. I have a family member who is completely non-verbal and so I really appreciate it when people, such as yourself, take the time and effort to speak up for people that do not have their own voice.

    As a Speech and Language Therapist I hope to be that rock that has such a significant ripple effect on others around me.

    Best Wishes
    Katherine

    • Katherine,
      I have to tell you—reading your words literally sent a chill down my spine. I’ve maintained a CaringBridge site for my friends and family throughout my experience in order to keep them informed of what was happening. In a post I wrote on the day I was released from rehab, I wrote that although I didn’t yet know what it would be, I knew with certainty that SOMETHING good would come out of the experience I was going through. Others here have used the word “inspiring” to describe my story—I never set out to inspire anyone; I have just tried every day to put one foot in front of the other (literally for a while, as well as figuratively)—but for some reason it was your comments that finally made me understand that in some small way, perhaps knowing something of my experience will be able to aid others in helping people who are in a similar situation. I cannot put into words what a wonderful gift that is; I sincerely thank you for that.

      As for taking communication for granted, I HOPE I never forget how isolating it feels not to be able to communicate. But I’ve already thought of self-imposed vows of silence to temporarily provide a refresher experience (however inferior it might be) of what this experience has been like.

      Thank you so much for what you’re doing with your life! May you indeed create many ripples during your career, and in your own family.

      Best to you always.

      Claudia

  12. Hi Claudia,

    Thanks for your fascinating and inspiring narrative. I was just curious what advice you have for non-stutterers when speaking to a PWS? Like what kind of behaviors set you at ease and what kind of behaviors exacerbated your stutter?

    Thanks!
    Elaine

    • Elaine.

      Thanks for your comments. I really appreciate them.

      I would suggest first that you do whatever you can to put the person at ease. For instance, for most people I would say to maintain eye contact as you’re conversing. However, I have had several people with dementia tell me just the opposite–that it actually makes them more nervous to have someone looking at them when they are trying to speak; I have also encountered that situation when dealing with individuals who have autism. Let the person with the communication challenge take the lead—if they’re looking at you, look back at them.

      Make sure you try to maintain your own sense of calm. For instance, smile; research shows that when a person sees someone smiling, they’re more likely to smile in response. More broadly, be conscious of your own body language. If you’re anxious, people even into a fairly advanced state of impairment will pick up on that. For instance, if you’re secretly thinking, “Oh man! It’s that person who can’t speak clearly. I really don’t want to get roped into a long, uncomfortable conversation…”, even if you never utter the words out loud, people will be able to pick up on that underlying feeling you have. If you’re comfortable, that will go a long way to putting them at ease. I know my friends and family meant well, but I could tell at times that some of my visitors were uncomfortable seeing and hearing me in the state I was in. If you’re dealing with a person who basically can’t converse at all, warm and friendly physical contact can really be helpful—offer a firm handshake, a pat on the back, or an arm around the shoulder if appropriate.

      Nod when the person is talking, even if you don’t understand every single word he or she says. Try to get the point of the conversation at least, from whatever you can understand.

      Personally, I found it a lot easier and a lot less frustrating during the period when I was stuttering most frequently if others took the lead in long, complex conversations. I could much more easily respond to yes/no questions, nod my head, or express simple statements than carry my part in an in-depth conversation.

      DO NOT rush the speaker. Give the person time to express his or her own thoughts. That’s probably the thing that most disturbed me. It added to my own anxiety about how I sounded—which in itself made me more likely to stutter—and it made me feel like the listener was at a minimum impatient, or at worst thought I was stupid. And unless the speaker says that he or she wants you to, don’t fill in the words for him or her. Let the person speak, however long it might take. If I was really tired and frustrated, it was a relief when others guessed the words I was trying to say; when I had more patience, I wanted to speak regardless of how slowly I was able to do it.

      I hope you find these ideas helpful.

      Best wishes to you.

      Claudia

  13. Claudia,

    After reading your story I feel that I have more compassion for people that have strokes. I’m glad your family was so supportive and patient. It sounds like your recovery would have been different without them.

    I did have some questions. What type of stuttering-like disfluencies did you produce? Were they repetitions, prolongations, blocks, etc. Did it change over the course time? Do you know if what you experienced is typical of neurogenic- acquired stuttering?

    • Angela,
      The experience definitely made me more compassionate towards those who have speech difficulties, or are suffering to one degree or another from paralysis, have suffered a traumatic brain injury, or are hearing or sight impaired. My admiration for those who have moved on from strokes—especially those much more severe than mine–is immense; these people help to remind me of how fortunate I was. It could have been so much worse and I’m cognizant of that fact—and therefore very grateful.

      I quite simply would have been lost without my friends and family. It was the most challenging time of my life physically and probably psychologically, but I was overwhelmed, motivated, and strengthened constantly by the love and support they showered on me. I will never be able to thank them enough.

      In addressing your questions, I feel the need to apologize in advance for the simplicity of my answers. Again, I’m trained in political science, not speech language pathology. But I will be happy to give you other examples of what I went through. I don’t recall ever having repetition of words; I could not get words out to start with, much less repeat them. I suppose I would fall more into the category of prolongation, at least at one point. For instance, I remember describing to Dr. Shapiro the moment when I was wheeled into the Operating Room. In an attempt to put me at ease I suppose, they asked what kind of music I liked. Billy Joel was the first singer to come to mind. But in trying to relate this incident, it came out “B-b-b-b-b-illlllllll-y Joel. I remember getting stuck on the “b” but the “ill” part seemed drawn out to me as well. What I came to call “blocks”—and again my apologies if this is not how professionals actually use the term—occurred on my initial syllable of a word; I don’t recall ever stumbling as in “com-p-p-p-p-pass”. Once I got started with a word coming out, it was ok; it was the initial syllable that would get me stuck sometimes. I don’t really recall the stuttering changing in the sense of how it sounded when I had a block–maybe a bit in terms of not dragging words out-but it definitely seemed to lessen in frequency over a week or two, until it rather suddenly almost disappeared. But it was an interesting (albeit extremely frustrating) evolution in terms of the entire “speech impairment” experience. In one of the first text messages I was able to send, I remember saying to my friend, “I finally remember the words I want to say, but now I can’t get them out of my mouth. It’s like they’re stuck.” I’m not sure which was more frustrating—not knowing the word to begin with, or not being able to say it. Dr. Shapiro has said from the first time I spoke to him on the phone that it seemed pretty typical of neurogenic-acquired stuttering.

      I hope—as amateurish as my answers to your specific questions are—that you find them to be helpful.

      Best to you.

      Claudia

  14. Hi Claudia,
    I am training to be a speech and language therapist and would just like to thank you for sharing your story. It is really interesting to read a story like this, especially one about an acquired stammer. I think many people could learn from what you have said, and the experience as you say has changed your understanding and the way you listen and communicate with others. Being able to communicate is something that people take for granted and don’t realise its importance until it is gone! I hope to help people in future and help others through experiences such as yours, and leave people with a positive view of speech and language therapy! I wish you well,
    All the best, Jamie

    • Jamie,
      Thanks for your comments and your good wishes. Most of all, thank you for what you’re training to do with your life. Unless you have ever felt the isolation yourself of not being able to communicate-for whatever reason—I don’t know if you can fully grasp the gratitude people will very likely feel towards you for “throwing them a life preserver.” I wish the very best for you in your work!

      Claudia

  15. Hello Claudia,
    I am so happy that you shared your experiences with us! This story hits close to home as my own father has had a stroke and has communication challenges which has influenced my career choice of becoming an speech-language pathologist. Though he did not experience stuttering, his communication is severely impacted by his stroke. I found your insights really inspiring and they will be useful in my own practice and personal life. I really appreciated your comment about people thinking that your difficulties with communication impacts your intelligence, I too have noticed that with my dad in public places. As was touched on in other comments, I really appreciated your discussion on the ability to communicate using your body language, in my household, body language and facial expressions dictate much of the conversation between my dad and our family. Your story was very moving to me. I do have a question for you regarding the stuttering experiences that you have had. Was there a particular situation that you found really difficult (talking on the phone, starting a conversation etc.)? Again, thank you for sharing your story so that students like myself can gain insights into what it is like to experience stuttering and how it has impacted your life.
    Thanks again,
    Michele

    • Michele,
      Thanks so much for your comments. I understand the impact your dad’s experience has had on your career choice; if this had happened to me 20 years ago, I can absolutely see myself having gotten my doctorate in CSD instead of political science.

      There is perhaps no other issue, except downright physical mistreatment, which angers me more than when I observe the way some people treat others because they have speech difficulties. Whether someone stutters from a young age, has a TBI, has suffered a stroke, or can’t speak clearly because they are suffering from one form or another of dementia, it is a physiological problem. It infuriates me the way some people act as though they assume it is a reflection of how smart a person is or was. To borrow an example from popular culture, I certainly don’t know of anyone who would challenge Stephen Hawking’s intelligence or mental capacity just because he uses a computer to speak; for me, that is the most important lesson coming out of his notoriety. “Your brain is hurt right now; it needs time to heal”—that really has been one of the most important, affirming messages I’ve received while I’ve recuperated.

      I did HATE phone conversations, precisely because I couldn’t rely on body language in that case. I also found them exceptionally tiring. I suppose it was me trying to “present the best face possible”, but if I texted or emailed someone, they had no way of knowing how long it had taken me to write out the message. I could correct typos and proofread. But if we talked on the phone, my brain was in overdrive during the conversation from trying to concentrate on what I wanted to say and then actually getting the words out. Thanks to my friends, family, and my therapy team, I don’t really remember feeling self-conscious about starting a conversation—we all knew I was going to stutter, but they encouraged me to talk and didn’t make me feel awkward about it. The exception to that rule was the first time anyone came to visit. When any of my loved ones visited for the first time, I found it humiliating having them see me that way, I cried, and I tended to let them do most of the talking so I didn’t have to. But after the embarrassment of the initial visit was no longer an issue, I talked pretty freely around friends, family, and the staff of the rehab hospital.

      Michele, I wish the best for you and your family, and in your career. Thank you so much for what you’re doing.

      Claudia

  16. Claudia,

    Thank you for sharing your story! It moved me to open up about my great aunt in class. It seems like you have truly learned from your experience. What would your advice be to others in a similar situation (who begin to stutter after the same surgery?) You are truly an inspiration!

    Warm Regards,

    Mario

    • Mario,
      I am so glad to hear from you! I cannot tell you how often I’ve thought of you and your family since we met in class. I hope you’re all doing well as you adjust to your new normal.

      I’d say “embrace your therapy team and give therapy all you’ve got to give.” Personally, I think a big part of that is having a good relationship with the therapist(s). I definitely worked hardest with the therapists to whom I felt closest. If clients have some choice with whom they’re going to work—but I know they may not in every situation, especially if they’re in a facility—find a person with whom they can form a good relationship. They need someone who will really push them when they need it, but who will also understand when they’ve hit their limit. They need someone who will make the experience as enjoyable as possible. But above all else, they need someone who respects them as individuals, believes they can get better, and cares about helping make that happen. Don’t be afraid to speak up if something’s not working—it’s ultimately their own improvement that is the definition of success. Be their own best advocate and make changes when necessary—whether it’s asking for different techniques or finding an entirely new therapist if that’s what’s called for—whatever it takes to have the most successful therapy experience.

      I would also say “surround yourself with loving, supportive people as you walk through the process.” It’s not an easy one, but having others around who cheer you on definitely makes the difference.

      And I cannot stress this enough–if there are people going through this same exact situation, I would say “sleep as much as your brain needs, but keep talking when you’re awake.”

      Great hearing from you Mario! Thank you so much for what you’re doing with your life. Please keep in touch.

      Claudia

  17. Hello Claudia,

    I am in the communication disorders post baccalaureate program and I am very touched by your story and your desire for SLPs to treat their clients with the uttermost respect. My professor just finished a unit on counseling with clients and teaching us different approaches to use when first meeting the clients and talking about their disorder. I was wondering that throughout your treatment if you received any types of counseling? And if so, what was it and if it was beneficial for you? I am so glad that I was able to come across your story and am able to relate it to what I am learning inside the classroom.

    Regards,
    Hang Nguyen

    • Hang,

      At the particular rehab facility where I sought treatment, every patient does go through psychological counseling—in my case, it was approximately once a week. I remember mentioning during one session in the first week or two that the previous day had been very emotional—word had leaked out among my former students as to what I was going through, and I had been overwhelmed and humbled by the number of kind, uplifting messages I received, even from some students I had not heard from in years. But generally those sessions consisted of me conversing with the doctor about whatever topic seemed to come to mind—often people we knew in common either there at the facility or at my alma mater nearby. Most of all, these sessions helped to make me feel normal again—to talk about life in academia, professors we both knew, and even a couple of times about politics (there had just been an American congressional election days earlier). It was a great relief to me to talk about these topics rather than my physical impairments. I suppose it was my way of saying “I’m still me; the wheelchair, the brace, and these other things are just temporary annoyances that I would rather not dwell on.” Near the end of my inpatient stay, with my word finding difficulties and stuttering mostly resolved and my pace of speaking pretty much back to normal, I remember the doctor jokingly saying, “It’s nice to finally meet the real YOU.” I also remember attending one stroke support group during the first week I was there which was facilitated by a different psychologist—we each described the circumstances of our experience and talked about our initial feelings when we realized what had happened to us.

      In terms of “counseling” per se during my speech therapy specifically, I quite frankly do not remember much from my initial assessment. I was still extremely disoriented at that point—it occurred during my first full day in rehab. I do not even remember if we did any activities such as completing worksheets; I have only a brief recollection of conversing with the therapist for a few minutes. It was not until a week or two later that my regular SLP mentioned to me in passing, “You were very monotone when you first arrived.” I was not even aware of that. I knew I was speaking slowly, but I did not realize there was little or no inflection in my voice. I do not recall any specific counseling from my regular SLP during our sessions either. Our activities primarily consisted of such things as listing as many words beginning with a particular letter as I could, identifying pictures, and reading sentences or just conversing in order to regain a consistent speech pattern.

      Thank you so much for what you are training to do with your life Hang. Best wishes to you.

      Claudia

  18. Hello! Cases like yours are so incredibly interesting to a future speech-language pathologist. As a graduate student we rarely, if ever encounter someone who presents with a neurogenic-acquired stutter. I appreciate you sharing your story as it has assisted in my learning and experience with different fluency disorders. Your story reminds me of an assignment we had to do in my fluency disorders class. Unfortunately and unlike our assignment, your experience was not intentional. We were asked to utilize a pseudostutter for unfamiliar listeners throughout our daily lives for a full day and discover what it is like to be a person who stutters for a day. We all experienced different things and people’s reactions. When you state how someone could potentially think your intelligence was decreased because of your stutter rings true. It was apparent throughout the assignment that oftentimes people gave funny looks or impatience, or a glare to pass along the thought that I am not a person worth talking to. I am happy your stutter improved and appreciate that your mind has been opened to better appreciate and provide empathy to those who have trouble communicating.

    • Hello.

      I am glad you have found my story beneficial; not being trained in CSD, I did not realize how rare my situation is.

      What a wonderful assignment! Personally, I cannot imagine seeking treatment from a person who does not have at least some idea of how frustrating and humiliating the situation can be. Marvelous learning experience!

      Thank you for what you are choosing to do in your career. Best wishes to you.

      Claudia

  19. Hi Claudia,
    Thank you so much for sharing. I am currently studying Speech and Language therapy, and it was really interesting to read about your stuttering experience, and to expand on my own knowledge of the topic.
    There is so much to learn from this paper, and I’m sure it has enlightened many people, including myself. Thank you for not only reflecting upon the frustration and humiliation that you encountered, but also the positives of this experience, and the improvements that it has made to your active listening and conversation skills. You are an inspiration, and I hope you continue to share your story.
    Thanks again,
    Beth

    • Beth,
      Thank you so much for your kind words. Most of all, thank you for what you are choosing to do with your life.

      As strange as it may sound, this really has been one of the most beneficial experiences of my life. To be able to better understand the challenges of others, and to deepen my compassion for others—these are remarkable gifts.

      Best wishes to you.

      Claudia

  20. Hi Claudia,
    Thank you so much for sharing your story. Although brief, I admire how much your stuttering experiences have positively impacted your life and those lives you touch. I particularly love how you state the ability to communication freely is at the very heart of what it means to be human. That is the very reason I decided to join the SLP field. Your ability to work through such hardship and recover is inspirational. In my graduate fluency course, we were asked to pseudostutter in public. Those short experiences made me realize how much my own feelings of self-worth are tied to my ability to communicate successful with other people. Your story solidified those feelings. When I have clients who stutter, I hope to become a more active listener and use your words of wisdom to be a better clinician.
    Sammy

    • Sammy,
      I am so glad you have found it helpful to read about my experience. There truly is nothing like “walking in another’s shoes” to help you understand situations from someone else’s perspective, is there? I hope I never forget the way I felt in that moment when I realized that I could not write or type at all, or even read or speak clearly. It has made me much more compassionate of anyone who feels isolated from the rest of the world, for whatever reason.

      Thank you so much for what you are choosing to do with your life. Best wishes to you.

      Claudia

  21. Claudia,

    Thank you so much for sharing your story. I can’t even begin to imagine how scary and frustrating this experience must have been for you, and I commend you for turning it into such a positive learning experience for you, and especially for others. I’m currently in graduate school for Communicate Disorders, and will be a certified Speech-Language Pathologist within the next few years. Stories like yours are so valuable and humbling; they help remind current and future clinicians of the struggles our clients may face and how we are to treat them as a person first, with respect and love. It is essential for clinicians to understand how our words and actions can affect our clients, both positively and negatively. I like what you said about clinicians needing to be a source of hope; this is so true. I also find it extremely interesting that you developed a stutter as a result from the removal of the tumor on your auditory nerve – this may further show us that stuttering is not 100% motoric, but rather that there may also be an auditory component to stuttering. Thank you, again, for sharing your story.

    Raquel

    • Raquel,
      Thank you so much for what you are preparing to do with your life; you truly will enrich the lives of others through your work.

      I honestly cannot say enough good things about my therapy team. I never for one moment doubted whether or not they really believed I would get better. That gave me so much determination—to know that I just had to make it through this difficult time. I remember one day in particular—a few days into my stay at the rehab facility, when the reality of my dilemma was setting in for me—I actually started to cry in the midst of a physical therapy session. The therapist said something to the effect, “This is normal considering what you’ve been through, but you will get past it in time.” I cannot tell you the comfort those words gave me.

      But yes, PLEASE do remember the negative impact your words or body language can have on your clients as well. The moment that made me the angriest during this entire experience was when I encountered an occupational therapist who had the attitude, “You must REALLY be stupid…” just because I was having trouble understanding how she wanted me to answer a question that she was asking me. Of all people, I did not expect that sort of treatment from a professional, and immediately afterwards, asked to be scheduled in the future with a different therapist. I could not then, and still cannot, imagine working as closely as you must in a therapy situation with a person who lacks basic compassion.

      As for WHY I started stuttering, you are probably far more knowledgeable in that regard than I am. Actually no one has ever pinpointed for me why it started (or stopped for that matter—I am just speculating that sleep played a role). Dr. Shapiro has always discussed it from the perspective of “because of the surgery or the stroke….” I will say this though: none of the individuals with whom I spoke prior to my surgery, one of whom who had undergone the exact same procedure, mentioned developing a stutter after their treatments. I realize now how different my experience has been. Looking back on it—and this may also get at your point about the auditory nerve being involved—I find it interesting to realize that I was not aware of sounding monotone. “Slow” I knew; “monotone” I was not aware of until others mentioned it. It was definitely an adjustment, especially in those first couple of months, being deaf on one side.

      I wish you the best of luck Raquel.

      Claudia

  22. Claudia, this was a beautifully written paper. I loved that you wrote honestly about how you felt during your difficult times recovering, and especially that you shared that you didn’t feel human. I feel like many people who stutter feel that way, but are not willing to admit it, but instead they let shame, guilt, fear, and anger lead their actions (which I also understand!). I believe your words are an inspiration for others who are in a similar situation, as well as for the family members and friends that want to understand and help their loved ones in these circumstances as well.

    • Stephanie,
      Thank you for your kind words.

      Indeed, it was a terribly frightening, disheartening experience to realize that I really had no effective way to communicate for a time. Even my texts—as inadequate a form of communication as that can be—were filled with typos due to my impaired vision and the ataxia from which I was suffering. But within days, texting and otherwise writing on my phone’s keyboard nevertheless became my outlet. I can only imagine the isolation I would have felt long term if I had not at least had that outlet. I would encourage every therapist to help his/her clients to find SOME way to express themselves. For other PWS, I would encourage them to write, paint/draw, take pictures, or to play a musical instrument, in addition to working on their speech; I believe all human beings need some way to express who they are. And for individuals who cannot use their hands or who lack the ability to speak entirely, work with them on learning to use any other type of method or assistive device that is appropriate in order to communicate their thoughts, whether it be eye blinks or computer technology; people need some way to communicate.

      Best wishes to you.
      Claudia

  23. Hello,
    I am a current graduate student in a speech pathology program and I found your article moving and insightful. I thought that your article was very honest and compassionate because you have used your experience to advocate for others who have difficulty communicating independently. I agree with your statement, “90% of one’s impact as a communicator occurs non-verbally”. I feel like you learn more about a person by their non-verbal messages transmitted through facial expressions, gestures, and body language. Has anyone ever criticized your unique experience with stuttering because it is so different than the “typical” presentation of the disfluency? If so, how did you handle the situation? Thank you for your time.

    • Toni,
      Thanks for your response, and thank you so much for what you are choosing to do in your career. May you help many people along your path!

      No, I never encountered anybody who “criticized” me as you say for not being a typical PWS. The members of my therapy team (as well as my friends and family) all seemed from the start to have the perspective, “Ok, these are the difficulties Claudia is experiencing right now; let’s figure out how best to help her deal with them until she overcomes them.” Quite simply, anyone who did not have that attitude, I did not want on my team—and I took the necessary steps to make sure they were NOT on it. But believe me, I realize, especially due to what I know of stuttering from Dr. Shapiro, how lucky I have been to have such a supportive group around me; I am profoundly grateful for them all, whether friends, family, or professionals.

      Best to you.
      Claudia

  24. Yes! Love your story. As well as getting your feelings across, I enjoyed the little humor you threw in there. Good for you to be able to laugh in these times. The avoidance behavior you mentioned about the fork at the beginning was so interesting. Thanks for sharing.

    • Maria,
      Thanks for your comments.

      A positive attitude definitely made a difference for me—not just my own, but others’ attitudes as well. I’m a huge history buff, especially anything surrounding the life of John Kennedy. I will NEVER forget one friend coming to visit a couple of days after the surgery. Immediately after she said hello to my family and me, she asked, “When was JFK assassinated?” I was not even alert enough to have my eyes open but I slowly whispered, “November 22, 1963.” Her “Ah, she’s going to be fine…” response was just what I needed to hear at that moment, and it set the tone for an uplifting visit.

      Thanks for writing.

      Claudia

  25. Hi Claudia, I enjoyed reading your paper and found it very useful as I am a first-year Speech and Language Therapy student from the UK. I found the ‘My Feelings’ section very moving and also greatly appreciate all the advise you gave. Aditionally, I found the points you made in one of your responses about tailoring therapy to your clients’ interests very helpful!
    Thank you for taking the time to share your story.
    Best wishes,
    Fizza

    • Fizza,
      Thanks so much for your comments, and most of all, thank you for what you are preparing to do in your career.

      Until I was in a position where I could not communicate easily, I did not really understand how an individual in that situation would be affected emotionally. Now I understand.

      This conference has been such an interesting experience for me. Of course most of the people who have commented on this paper have been in the field of CSD; their/your book knowledge of the subject clearly surpasses mine. But living the experience has taught me invaluable lessons about the techniques of actual therapy experiences. I learned from a patient’s perspective what worked and what did not: which activities held my interest and which did not; how much a therapist could challenge me and when I needed him/her to structure a different type of session based on my physical or emotional condition; and what they needed to say to me and how they needed to treat me in order to inspire the best from me-and things they could say or do that would completely cost them all of my personal and professional respect as well as my cooperation in their sessions. As someone who has been a part of academia for two decades, I certainly would never disparage classroom training, but I predict you will find your clinical training to be critical for your progression in your career as well. Best of luck to you!

      Claudia

  26. Hi Claudia,

    Thank you so much for sharing your story! I really appreciate your advice to clinicians, as I am in graduate school studying to be a speech-language pathologist. Currently I am working with a stroke patient and I can see his frustration when trying to recall words. As you described in your experience, you know he knows what the word is, but simply cannot recall it. It is so hard not to jump in and help him right away. Also, it was very interesting to hear about your neurogenic-acquired stuttering. We have not talked about that in our fluency class, but you described many aspects of typical stuttering. I’m so glad that you feel like you have gained valuable insight from this experience because I am sure that it was a difficult journey!

    Kind Regards,

    Alyssa Kubinski

    • Alyssa,
      Thank you for your comments, and thank you most of all for what you are already doing with your life.

      I very much relate to the way Jill Bolte Taylor describes word finding in My Stroke of Insight. It really is like walking into a room filled with file cabinets. You have to figure out which file cabinet contains the information you need, then you have to narrow it down to which drawer contains the file, then you have to find the correct file in the drawer, and finally sift through all the information in the file until you can pull out the one piece of information you need. It can be a major accomplishment to complete all of those steps, so it can definitely be slow—even from the perspective of the patient—so it certainly deserves to be celebrated.

      One thing I did not expect at all was how tiring it would be physically to mentally process everything my brain had to process—conversing, driving, even riding in a vehicle with someone else. When our brains are functioning normally, so many of the signals we receive are processed without us even being aware of them; when they are hurt, we can suddenly become aware of every signal we are receiving, which can be completely exhausting. For me at least, it definitely helped to have the people around me acknowledge from time to time how difficult and tiring it was.

      Best to you Alyssa!
      Claudia