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Posted by: Kassy ® 12/01/2002, 16:17:24 Author Profile Mail author |
My name is Kassy, and I just recently discoverd that there was a name for what has been going on with my voice for about 9 years now. I am 21 years old, and have found it very hard to hold down certain types of jobs. Due to the fact that I am always trying to hide my disability. I am currently working for Utah Schools for the Deaf. I am a Deaf Ed. Teacher's aide, and it has been very easy for me to continue working there. It is very helpful for me to work with children with disabilities, because there is a sense of compassion and understanding for them. I also don't have to speak. I utilize my second language, which is American Sign Language. I don't really know if there was a particular event that occured in my life that my AB/SD stems from, but I do know that when I was younger, my brothers and sister, and my Granparents would always tell me, "Kassy, quit talking like a baby, or lower the tone of your voice. It's too high pitched." So I guess I just gradually became more concious and aware of my own voice. And in becoming more aware of it, I became more and more self-concious. First it stared out as a constant tremor. I always sounded as if I was nervous all the time...which I was. Not because I ever felt threatened, but more because I was anxious about how I sounded. Then as time progressed my condition worsened. My voice would just cut out. I compare it to what another person sounds like when they are talking on a cell phone and you only hear the first or the last part of the word because of poor reception on the cell phone. Or when you've got the hiccups and you say a word and hiccup at the same time. So only half of the word gets out. So now when I speak, I seem to always speak on an exhale. When I get ready to speak, I take a breath in, and then speak while I exhale. I have pretty much been pushed away from my extened family. They all make fun of me because I don't sound normal anymore. I also isolate myself from them because when I was around them I sounded worse and I would get way too anxious, when all I wanted was just to be accepted, and not have to be constantly obsessing in my head about how I sounded. As I'm sure that anyone reading this can understand that AB/SD is holding me back from my life. I know what I am capable of and I know that I was blessed with many, many talents. I want to enroll in college and progress in life, however I always feel stuck. I feel full of shame and embarassment, and it takes an emotional toll on me. I am very isolated, because I isolate myself. I make that choice. But I never chose to have AB/SD and I am tired of feeling so lonely. Some days are better than others. I just want to say Thank You to everyone who is involved in these support groups. I don't have to feel like I am fighting this battle alone anymore, and I would also like to thank anyone who is reading this. Thank you for taking the time out to hear my story. |
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Re: I'm new here. -- Kassy | Top of Thread | Archive |
Posted by: ida neary ® 12/01/2002, 17:02:08 Author Profile Mail author |
Hi Kassy Welcome. I am glad you found us. You will find lots of support, information and understanding here. Ida AD/SD 25 years Iowa |
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Posted by: Doris St. Clair ® 12/01/2002, 17:46:06 Author Profile Mail author |
Hi Kassy, you are not alone. This is a great place to come for support and information. Hang in there. I remember when I was your age, I had a slight case of SD but didn't know it then. I remember that at the time I was in love and whenever I tried to say "I love you" the words would stick in my throat. Later on, I still had times that words would not come out and went to several different doctors. This was in the 60's. They would say "oh honey, you are just nervous, just relax, you're be ok". So, I ended up trying to forget about it and going on with my life. I married, had 4 children and even though words still sort of stuck in my throat, I would tell myself that I was just nervous, even though I didn't feel nervous. Well, the years went by and now I have a severe case of SD. Botox works for me most of the time but not all of the time. I am so happy that you found this BB so early in your journey. Don't worry too much about family support because they probably just don't understand SD. Just believe in yourself and continue your search for finding the right way for you. I think it is wonderful that you are working with the deaf. That is something that you should be very proud of. My very best to you. Doris ST. Clair AD/SD VA |
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Posted by: sarah bayle ® 12/01/2002, 19:04:36 Author Profile Mail author |
Kassy- Welcome to this BB. I only recently found it myself and have gotten so much out of reading, hearing, learning from others. It is amazing how so many of us feel so isolated with the same issues. My family doubted for years that there was something wrong with me. My family does not understand how deeply it has impacted my life and my very personality. I also have AB/SD with lots of tremor and people always think I am nervous or anxious. I am not usually nervous at all unless I need to make people believe that I am not nervous! It's terrible. I do not believe that this disability is in any way your fault for speaking a particular way when you were younger. I have several different voices I use when I need to be understood and try different octaves or tones or whatever I can muster. It is so awesome that you can sign. I have been learning ASL for two years. It has been hard for me to learn but I'm trying. Capitolize on that great skill you have and Sign On! hope to see you post again- Sarah |
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Re: I'm new here. -- Kassy | Top of Thread | Archive |
Posted by: Kim ® 12/01/2002, 22:02:01 Author Profile Mail author |
you wrote: "I do know that when I was younger, my brothers and sister, and my Granparents would always tell me, "Kassy, quit talking like a baby, or lower the tone of your voice. It's too high pitched." When I was little I was forever being told to 'quit whining' -for pretty much the same reasons as you. So that made me focus on how I sounded more than I otherwise would have too. I eventually learned how to correct that so they would stop complaining, but of course, that only made them more convinced that I was doing it on purpose when I wasn't. ...this was, of course, after they forced me into beginning to speak in the first place sometimes after I was 3. As for enrolling in college, I'd say go for it. Get the Disability Services office on your side, and then nothing can keep you from going for what you want! |
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Posted by: Carolyn Hutchison ® 12/02/2002, 10:17:37 Author Profile Mail author |
Welcome, Kassy. I hear you... I hear your pain, frustration, and fear. I've felt similar emotions over the years. Now, I tell people what's up with my voice. Once they have the information, I've found them, without exception, to be decent about it. I've accepted my voice; it's a reality that doesn't ever go away. Sometimes, I think that it does get in my way; often, people tell me I worry too much about it. You know what? I probably do... The truth is that you and I (and everyone else out there) should not be ashamed of or embarrassed by our voices. Pursue your dreams--whatever they are. Reach your potential. Don't let your voice hold you back. Use it to your advantage. A characateristic which sets us apart from the majority encourages a different sort of growth (compassion, understanding, etc.). I hear that humanity in what you've written. I have no doubt that you can do whatever you decide to do. Good luck.
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Posted by: Anissa Shanks ® 12/02/2002, 18:15:03 Author Profile Mail author |
Hey Kassy, I'm 30 yrs. old and am fairly close to your age. I just wanted to say that I can totally relate to what you're talking about with the high pitched "baby" voice. I say go for what you know. I made it through college and earned my degree with this voice. I wasn't diagnosed until a year after I graduated college. I often kick myself for not trying to get help sooner. I can't help but wonder what my GPA would have looked like had I not had SD. It got so bad to the point that I would drop classes that had a lot of class participation. And what's worse was the teachers that made you read out loud to the class. UGGGGHHH!!! But, you can't look back and keep saying "what if". I get Botox injections every 3-4 months which really helps. I am applying to graduate school and law school now so don't ever let anyone tell you that you CAN'T do something. I had a doctor tell me that I shouldn't even consider being a lawyer because of my voice. Do what YOU want to do, not what someone else THINKS you should be doing. Anissa |
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Re: I'm new here. -- Kassy | Top of Thread | Archive |
Posted by: Kassy ® 12/02/2002, 19:40:33 Author Profile Mail author |
Wow! That's all I can think right now. I was so touched by all of your responses, that I was overcome by emotions! What beautiful people you all must be! I have never had an experience so overwhelming, until reading and being flabber-ghasted by everyone's willingness to recieve me, and in turn my anticipation to recieve all of you. I have really changed some of my negative thought patters, into more accepting, surrendering, and most importantly, a sense of pride. How can I be so proud of all of you, and not myself? I feel as if I am in a new, cool club! No initiation necessary, just being real got me here! That is indeed what I stand for, REALNESS! :) So, I close in saying thank you all for your beautiful words of inspiration, and acceptance. Kassy
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Posted by: Larry Blair ® 12/02/2002, 20:03:28 Author Profile Mail author |
Hi Kassy, And welcome to the BB. I was new here too, a few years back. Didn't know what was going on with my voice, and kind of ran across the BB here. There are some really fine people here, and all have quite unique experiences with SD. There is a wealth of information and support. As you will see your not alone, and that always makes it a little easier. Hang in there!! Larry
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Posted by: John Comer ® 12/06/2002, 15:09:47 Author Profile Mail author |
Kassy, it is unfortunate that you appear to have people who should care about you but who do not appreciate your problem or offer much support. The bulletin board is a huge source of information and support and I am sure that I communicate the feelings of all of us in saying that we will help you as much as possible. I have ABSD and I know that it can be very frustrating. Seek the best medical help you can get and hopefully since you are young you will respond to treatment. Mayo Clinic in Scottsdale might be a place for you to go assuming you have coverage that will enable you to go there. I also believe that there are some knowledgeable doctors in Denver although I don't know their names. I'm not sure about Utah although there certainly may be some expertise available. Anything we can do for from the bulletin board we will do. Hang in there and keep your chin up. John ABSD Minnesota |
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Posted by: fancynancy ® 12/06/2002, 15:49:04 Author Profile Mail author |
Hi Kassy, You know, I'll bet everyone here on the BB can relate to everything you said. You definitely came to the right place. This is about as *real* as it gets. No phony pretenses (for the most part, lol) because we're all going through this. Definitely pursue your dreams. Sure, it won't always be easy, but think of the satisfaction you'll have, instead of looking back years later and going, "Gee, IF ONLY I tried". When you get to know people on this BB, you'll see they come from all walks of life, all kinds of jobs. Several are even Teachers. I used to play keyboards and sing in rock/Top 40 club bands. Often singing songs out of my range. By the time I turned 30, I did this really loud scream (out of stress, not onstage) and suddenly within a week, my voice changed. Years later I got an official diagnosis of AB SD. I tried Botox and although it hasn't worked for me, I'm still experimenting. Try Botox. Maybe it'll help. Also look into chiropractic and acupuncture, to ease the SD. Search this BB and you'll find some helpful tips. I own and operate a recording studio, and am constantly dealing with all kinds of bands and artists: hardcore rock, rap, jazz, celtic, punk, folk, you name it. Guess what? Nearly all of them have been cool with my voice. A handful have asked questions, but once they learn, they say "oh" and everything's fine. To them, it's probably just different, but okay. It's the ability of what you do that counts. I still give them a final product they're happy with. And whatever YOU do with your chosen career, the main thing is the service you provide to others. Also your attitude that you "can and will" use your talents that you have. --fancynancy--
--modified by fancynancy at Fri, Dec 06, 2002, 16:03:18 |
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Posted by: William T Walter ® 12/09/2002, 13:16:34 Author Profile Mail author |
Hi Kassy, I'm 25, only diagnosed for 1.5 years, and new to the bulletin board but find it very good to talk. I totally identify with choosing to isolate yourself. I felt I couldn't show this to anyone and still am hesitant to. The Botox works very well for me (I'm ADSD) so i actually don't have to deal much anymore with it for a couple months at a time. I know I am fortunate in this respect. It is very difficult that your family isn't supoprting you much. It is such a major blow to your identity, ego, confidence, social interactions, outlook for the future, ability to date, etc that you need help to keep a positive outlook and learn to cope. As everyone is telling me, utilize every resource you can to have info about SD, medical & insurance info, support groups, etc. Truly keep hanging in there and good luck. Feel free to email, Bill Walter |
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Posted by: Linda S. Adamson ® 12/10/2002, 08:55:48 Author Profile Mail author |
Kassy, your story brought tears to my eyes. God bless you in your continuing journey with this part of the reality of who you are. We do feel very defined by our voices. Our Washington DC support group had a conversation about voice pitch issues at our last meeting -- often talking in a very high pitched, almost falsetto or sing-song voice will, for some reason, result in very few spasms. Yet, as a woman, I feel that this type of voice projects a "Barbie" image that just makes me want to gag because it's not what my normal pitch is, and it's not the image I want as a woman. So some solutions aren't real solutions. You are not the first SDer I've heard of who has gone into ASL as a perfect fit area of specialization. I'm contemplating making more of my professional emphasis, as an educator, be in on-line teaching for the same reason. Your solution keeps something very important: warm human interactions. While some folks are wired to be comfortable emotionally as hermits of one sort or another, most people need the interactions and, for some, it's our lifeblood. I have just recently been grappling with the emotional effect that cutting back on "talking events" has been having on me. I have been purposely changing the way I work, cutting back and spacing out meetings and a host of other ways I would normally interact with people, because the exhaustion has really gotten me down. I thought this was working, but the resulting increase in isolation is having a bigger impact, I think, so I need to take stock and rework how I am dealing with my own AB SD. Your field is a perfect one to keep you plugged into people. I encourage you, as other posters have done, to pursue higher education. The field of deaf education is such an important one, because deafness can be so terribly isolating. Are you located where you have access to a good program in that field? Can you move to where the right program might exist for you? I hope you will have access to the means to explore the various treatment options thoroughly. I haven't yet heard from an AB person who thinks there is one thing that is "IT" -- normally it takes a certain combination to get whatever improved results are possible for a given individual. Are you in a local support group? Is there any chance you can get to the patient symposium scheduled in DC March 8? Please keep posting. I can tell from all the other responses that you have been getting lots of virtual hugs from this community. I have similarly found this to be a source of wonderful information, insights, comfort, and inspiration. You gave me, personally, a big dose of the latter by posting. with fond appreciation,
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Posted by: Eileen Giddings ® 12/20/2002, 17:39:43 Author Profile Mail author |
Kassy, I discovered this website in September after my first botox injection. I have had SD since 9/96 when I was in a stressful situation work. Don't give up. If you have something to say; YOU SAY IT. None of us is perfect, you know. Don't let this voice thing isolate you. You should see an ear, nose throat specialist who knows what SD is. Please get out there and advocate for yourself. You are important and what you have to say is important. If verbalizing is not good, do what I do, write it up. Good luck,
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