Tuesday, October 13, 2009

A reader's email

I often get emails asking for advice. Many ask me about Pagoclone, and I write back that it will not be a cure but might help some to reduce stuttering and that other treatment should also be tried out in any case. But few are as powerful as the response of a 16-year old girl (with her permission):
Yeah, I tried a self-help group, attended a stuttering conference, and tried stuttering therapy countless times. I also got an iSpeak SpeechEasy device. I seemed to have stopped stuttering 6 months ago, and it was the greatest days of my life, but then suddenly it came back, and it came back HARD. I can hardly speak a single word without stuttering, and I've had to give up countless times in the middle of a sentence I realized I can't finish. I'm at the point where I would rather lose my voice permanently, so no one would expect me to talk, than to keep struggling and forcing myself to get through one single sentence, and the embarrassment that follows. I know I'm only 16 years old, but I have so much stress from life right now, and I so badly want to go to college and get my life-long dream job (a computer repair technician- talking is a MAJORLY important part of the job). Life isn't going to get better, its going to get worse, and there's going to be more stress. I know there's no cure. I've been told it countless times, and it
runs through my head everyday. I know that Pagoclone or any other pills will NEVER, no matter how bad I want them to, take away my stuttering. But right now, my stuttering is so bad, that anything that will improve my speech by 20% will be a miracle to me. If you've been stuttering since you were little, too, then you would know what it feels like to think of your whole life ahead of you as hopeless, and a life that will mean nothing to the world. Even just enough
voice to tell people what it feels like to stutter would be great. Sure, I could write a book, but I'm not a writer. I have no special abilities at all, and no good looks. That's why I have to rely on my personality fully. I want to be the person who can accept their stuttering and make people laugh (in a good way), but I can never see that happening. I can't even see getting married. And I want to stand at the front of the church wearing a beautiful white dress and be able to at least say, "I do."

P.S. I'm sorry for writing such a long message, but you're a stutterer too (I presume) and you may be the only person in the world who would understand, or in the least bit care. I could write a 50000 page book on what it feels like to be a stutterer, and the probability of non-stutterers actually understanding it, or even reading it is so low that its pointless to waste my time writing it. I wish that some stutterers would just compile a book of how it feels to stutter and make it interesting enough that people WOULD actually read it. Not laugh at it. I'd be willing, if I could find more people, and if my life was more interesting. Thank you for your blog, and your interest in helping people. I want to be like you and do the same.
It would be good if you let her know of your experience in how to overcome some of the issues she is facing.


android said...

I can completely relate to what you have said. I also sometimes feel like there is no light of tunnel.
I've been to speech therapies, medication, self help group but none made any noticeable difference.
Right now I'm in Pagoclone trial I felt considerable improvement at some point of trial, so I assume that was the time when I was getting "Real" medication but I'm not keeping my hopes so high.
But hey,have trust and believe in yourself. YOU can certainly do it, no matter what people say or think about you. It's easier said than done but just keep on trying with your goal in sight.
I personally hail from a third word country. I did my Bachelors in Engineering there. Then I got admission in one of the top schools in U.S to do masters. Since my graduation, I've been working in a top Telecom company.
It's tough, but I'm managing.
So can you, I'm sure.
Best wishes....

Stuttering Jack said...

Dear Sweet 16,

Part 1

I feel for you, and all of us who have severe speech blocking and associated high anxiety know exactly how you feel at this difficult time in your life where you have everything ahead of you. I believe that one day you, like some of us, will one day come to see your particular problem as a blessing rather than a curse. It will certainly shape your life but you will be the architect of your existence and you must learn to mould your life with the clay that you have been handed.

Firstly you must do is accept what is. You will never be able to change until you first deeply and completely accept the situation and learn to fully love yourself as you are. Take full responsibility for your situation. You are not a victim to be washed around by the tides of life. It is within your power to change and the answers for you are all out there to be discovered by you. You just have to seek them out and it will be the journey not the destination that will be nourish your soul. Love yourself and love everyone you speak to as this alone will help wash away the fear of communicating with others.

Secondly you must stop using negative affirmations and visualisations. These are powerful forces that are currently working against your rather than in your favour. Instead of negative affirmations like “life isn’t going to get better, it is going to get worse”, “I know there is no cure”, “an improvement will be a miracle”, “whole life ahead of you is hopeless”, “a life that will mean nothing to the world” and visualisations like “I can never see that happening”, “I can’t even see getting married”, I want you to use positive affirmations and visualisations that create in your mind the pictures and images that you want to see in your life even if they seem such a distant dream to you and keep them in the forefront of your mind in big and bright colours. See yourself in that ideal picture and feel what it would be like to live that dream. Do this every day and you will begin to move towards that even if it seems so far away.

The most encouraging comment that you made was that you recently did something to experience total fluency for an extended period of time then stuttering returned. Now that tells me, and should tell you, that there is a combination (or number of combinations) that will unlock stuttering for you. You have found it once, now it is time to start your own little “Sweet 16 research program” to find a combination that is going to bring back what you have already shown yourself is possible. Who said stuttering cannot be cured? Stuttering can be cured but it is an individual path for each person that can be a short path or a long path. A cured for you may not be total fluency and your cure may not have been found down the same path that others may choose to take but you must believe that YOUR cure is achievable. It can be an easy path for some or it can be an epic journey for some but the longer the path to your own personal nirvana the more you will find out about yourself as an individual soul and the more you will find out about life in general. Your cure may not be total fluency it is more likely to be a level of acceptance and a method of controlling your problem but you will find YOUR answer if you take responsibility for finding the answer and start your search now.

cont: see Part 2 below

Stuttering Jack said...

Part 2

If you would like a few more tips to start you on your journey here are a few:

1) Realise that you are more than your speech dysfluency. Look for the positive aspects of your nature and continue to work on improving your non-speech gifts and work on anything that can improve your confidence.
2) Continually behave in as confident and self assured manner as you can.
3) Because the nature of your problem that you have described is “more than just a tangled tongue” and is in fact like a vine that has wrapped itself around almost every aspect of your nature, you are going to have to approach your treatment in a very systematic way for it to have a reasonable chance of success. Here are the steps:
a) As mentioned above acceptance of “what is” is a must
b) Love yourself for who you are, including the stutter, is a must
c) Before treatment you must go out and learn to deliberately stutter. Not in the out of control blocking way that “happens to you” but in a more relaxed in control repetitive way that you create. If the brain believes it has to create stuttering learn to do it on your terms not on the stutters term. Stuttering used as a tool is a completely different experience to the stuttering we are used to that we feel we have no control over. When you deliberate be dysflenent you are still “in the moment” and can function where as out of control stuttering you are not “in the moment” and cannot .in many cases, think clearly. This is a big subject in itself that I cannot go into right now but you must learn to stutter more fluently as part of any stuttering treatment program even if its goal is the eliminate your stuttering.
d) Following your learning and accepting of a controlled stuttering method to help you when all else fails you must learn methods to remove the emotions that you have built up in your body associated with your stuttering. Learning EFT (www.emofree.com) will assist in this area if you want to give it a go. You must also learn to think correctly about the world and your place in it in order to try to control your stress and anxiety levels. For this I can recommend Bob Bodenhamer’s book. I have them for sale on my blog. at http://www.stutteringjack.com. Once your mind and body have been treated you are ready to learn to remove your speech dysfluency.
e) You need to be very selective in choosing a stuttering treatment program that is write for you. Unfortunately, at this point, no one has undertaken an exercise to easily do this for the different manifestations of stuttering but it will eventually come and I am working towards that myself. As learning to control your stuttering is basically a behavioural process, the longer and more intensive the process, the better I have found for someone with the level of difficulty that you describe. I would be seeking out an extended intensive program although the success you will have in one of these will depend on the level of skill and experience of the clinician involved and I cannot recommend anything for you here so you will have to do your own enquiries or a bit of trial and error. Unfortunately the current trend is towards shorter treatment programs which, I believe is not the way to go. Certainly weekly 1 hours visits to an SLP will not help what you are describing as the intensity of your problem. Intensives courses are not cheap but that is the level of financial commitment that you are going to have to invest if you are to start out in a well equipped fashion on your life journey towards freedom from stuttering.

cont: see Part 3 below

Stuttering Jack said...

Part 3

f) What ever speech reshaping program you choose, realise that you will be fluent if you are “CONSCIOUSLY” “AWARE” of ALWAYS applying your learned skills or you will relapse. This is not true for all people seeking treatment but once again, for your severity, this will be the level of commitment that you will probably need to apply. Now you will relapse anyway to some degree as we all do, that is for certain, but with each relapse comes a learning experience. A relapse is not a excuse to give up. I believe your journey does not really start until you have your first relapse. Relapse is an opportunity to learn about you and what you have to do to achieve your goals. For most people a level of acceptance of stuttering is the best answer as I have written about in my blog but if your goal is fluency and all that comes from that you will have to plan what you will do when you relapse.
g) The best relapse management toll is membership of a post treatment support group. You need to gather a list of people who are working with the same speech tools as you and have the same fluency goals as you. When you relapse you get together with these people for a day or two or longer and you go through the process that your learned in your intensive program and drill the skills back into your brain and you go out and try again to make it last longer. As mentioned, this is not for everyone, but if it works for you then that is what you have to do.
h) When you are having success you must start to move outside your comfort zone and use you ability to speak more fluently. That will also involve its own set of challenges that I cannot go into here but joining a Toastmasters or speaking group has proven to help many people on out journey.

By all means try Pagoclone when it comes out but as you said, at best, it is likely to make it easier for you to get through your blocks not completely remove stuttering from your life. Whether that continues to have the same effect over time or whether you need to keep increasing the dose and whether you can afford the heavy weekly cost, only time will tell but undoubtedly it will where many people will choose to stop on their journey.

Your Speech Easy, as you have seen, works great out of the box but our brains soon make the timing adjustment to get our stuttering back on track. To be fair some people have continued to have success with DAF devices so don’t write them off too quickly as they are a great gadget to have in you “box of tricks” when you feel the need for something like that, I only wish that the distributors of these devices would sell them for under $1,000 which would still give them a profit.

Sweet 16, don’t let your stuttering control your life. You are the captain of your vessel and you can take it in any direction you want to go and even if you go through the stormiest of weather there is always a calm harbour ahead of you if you just keep moving forward.


Stuttering Jack

Pam said...

I certainly can understand the pain you are facing at 16. I stutter, but mine is mostly mild to moderate. I am an adult now, but can remember how I felt at 16. I was afraid to talk, afraid to be picked on, afraid to be different. So to alleviate those fears, I barely talked. I stuttered more severely as a kid then I do now.
Not talking was not the way to go.I missed out on SOOOO much.
The feelings you describe,and the inner struggle of stuttering, is really what makes stuttering so complex. Its not just what comes out of our mouths, its all the stuff we think and feel and fear.
I does get easier with age andmaturity. I gradually lost some of the fears (granted, not till later in life) and began risking stuttering openly. It does take courage and will, but you have to, if you really want to move ahead in life.
Your dream job is highly do-able. I am a high school career counselor, and I stutter in front of kids yuor age every day. Sometimes its scary, other days no one cares, including me. Youcan do whatever yuou want these days. High tech jobs, like a comp repair tech, are in demand.People are going to care about your skills, not just about how you talk.But you are right, you will need to talk to ask the user some questions about what needs to be fixed.
Trust the world around you. If you stutter and block, the world is not going to end and you will not e struck by lightening. It will be tough, but you will make the world a better place by feeling the fear and doing it anyway.
Feelings and fears are real, and we need to share them. I write about that on my blog.Please feel free to check it out, and one more thing. Love yourself. You need to do that -then the world will love you just as you are.