Hi All!
Well, speech therapy went well. My throat was a bit tights (gee - I wonder why) but everything was pretty much on track. I was honest about being in a funk and not doing my exercises and, while she didn't pull out the whips and chains, she wasn't too happy! She did understand though and helped me figure out what my funk was about.
There are times that I feel like people don't really "hear" me. That is so frustrating after taking so much time and so much effort to get my voice back! When people basically ignore what I am saying it makes me feel like it isn't worth the effort to talk if people aren't going to listen. Hence the funk. Why do exercises to be better if no one will "listen" to me anyway?
This SD stuff can really get to you. You wouldn't think it would make too much of a "dent" in my (and others') self-confidence but, let me tell you - it does. Nothing takes the wind out of your sails quicker than not being able to be heard and not feeling like you can express your opinions. It is almost like you become a non-person. You are acknowledged but then quickly disregarded. Even knowing that people are stupid and that the whole reason you can't talk is physiological not psychological, it makes you start to wonder if the thoughts you have are really worth being heard.
Even though I have my voice back, I still have to work hard to maintain my voice. Something that "normal" people don't have to do. I still have problems talking when it is loud. I still need the people around me to be understanding and to listen carefully because I sometimes have problems with certain words. I am still different.
It takes a lot to rebuild confidence even when I sound pretty much "normal." Other people might not know I have SD but I do and I constantly worry about if my voice will "betray" me by missing words or giving out. It is tiring.
The good news is that, most of the time, I feel the constant effort is worth it and I work on my voice to maintain and improve it. The "funk" only knocks me on my *** once in a while and then I shake it off. Sometimes I need a bit of help but . . . I always get back on track!
After all, I am the person who walked around in the "Why be normal?" shirt during my high school years!
Trisha
Voice Update: This whole post is an update. I did talk to Susan about my fears about cervical dystonia (of the neck people, the neck) and she told me that while I am probably more prone to get stiff necks, tension in my muscles, etc. due to the SD, I should be fine. She also told me that she doesn't think I will ever relapse and lose my voice. That was nice to hear!
7 comments:
That was so well put. I never thought of losing my voice in the literal sense, and you have done a beautiful job ofb raising our awareness. Good for you and your very hard work!
Trisha, I sooo know what you mean about having low confidence in your voice and the frustration of knowing that people aren't "hearing" you. It's hard people who haven't experienced the literal loss of their voice to comprehend how all encompassing the effects can be on your life and your psyche. I'm so happy for you that you've been able to regain your voice (It sounds great on the podcasts) but I understand how physically and emotionally draining the work to maintain it can be. I also had extreme muscle tension and discomfort in my neck prior to botox. It comes back if I let the botox wear off. I think it's a compensatory thing that the muscles do to try to make up for the funkiness of the vocal cords. Try not to worry too much about it.
Hang in there. You're doing great. And if you sometimes take a day or two off your regimen, cut yourself some slack. It's okay.
Normal is totally over-rated. It's good to know your voice is back but it would be difficult to always have to work at something. My best to you.
You spoke so eloquently capturing the sentiment of me and I'm sure many SDers. Thanks.
I can't imagine how hard it is for you. I can only imagine how frustrating it must be to feel left out and not heard. Thank you for making me aware of this illness and getting the word out there!
Having a chronic condition means there are chronic worries. I worry that I'll have an asthma attack in front of someone and become unable to talk and they'll figure out that I'm not normal. I also worry about being caught near triggers I can't get away from, or forgetting my inhaler.
I think it's normal... to want to be normal. But you're right. Inside... that's still you. With a lot to say! People will either understand or they won't, but at least you will have expressed yourself.
I can't even imagine what you're faced with on a daily basis. I try to think about it and have since I found your blog, but I never will. I do know what it's like to not be heard though, and that IS frustrating.
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