Thursday, January 8, 2009


Hi All!

Speech yesterday was good. Susan was pleased with how my voice sounded and how loose my neck muscles were. YEAH! I did tell her that I hadn't been that good about doing the massage three times a day consistently and she told me to work on that. However, she said it was much better than my previous appointment where she had to get all stern on me!

While at my appointment, Susan and I naturally talk about SD and it has gotten me thinking about the whole issue and a lot of stuff.

First of all, I am very grateful that I was led to Susan early in my "dance" with SD. I firmly believe that had I been given the run around that many SD patients are given and had gotten to Susan much later, I would not have been able to recover my voice like I have. Finding a speech therapist who understands SD and has experience treating it is hard to do. Also, finding a therapist who has had a number (albeit a small number) of AB patients is a major victory!

Next, I am grateful that I was able to stop working to recover my voice. Both Hubby and I are careful with our money and this has allowed me to be a "kept woman" for the past couple of years while I concentrated like a fiend on my vocal exercises. I can't imagine trying to continue teaching with a total lack of voice and then trying to find the time to do the exercises. I did teach for a couple months with no voice and it was so utterly exhausting that I would get home at the end of the day worn out and not wanting to do anything. Of course, I had a LOT of work to do for the next day so I could be prepared to teach without a voice again.

Another thing I am grateful for is my stubbornness. Many times it isn't a good thing to be stubborn but in this case, I honestly believe that my stubborn refusal to accept my lack of voice helped in my recovery. It made me determined to do everything I could possibly do to try to recover. It made me get "Mr. Timer" so I would do my exercises every hour, on the hour. It made me follow Susan's instructions to the best of my ability (sometimes I just couldn't figure out what I was supposed to do when I got home!). Who would have thought that such a character trait would work in my favor?

I am grateful for my support network: my Hubby (who should be sainted for being so supportive), my parents (especially Mom who would valiantly try to understand me as I barely produced a whisper on the phone!), my friend D (who also was good about the phone thing) and her daughter C (who is compassionate and understanding beyond her years), Susan (who spent almost as much time helping me deal with the emotional side of having SD as with the actual physical side), Lori (who helped me by being "just like me"), Dr. Stasney in Houston (who was oddly thrilled when I walked into his office with ABSD and then invited all of his interns in to listen to me try to talk). I am sure that there are others I have forgotten to mention - those who accepted my use of a microphone without too much comment, those who encouraged me to talk even when it was hard for them to listen, those who acted like it was normal for a person to order by writing things down instead of talking, those who didn't treat me like I was an idiot just because I had no voice. How could I be where I am today without any of these people? I have truly been blessed by God.

Finally, I am grateful that I can help others. Through my podcast, this blog, and my work with the SD support group (the one I started, not the one I am banned from), I have come in contact with so many nice and interesting people who have SD. I have shared my story with them and listened (not quite the right word since it is mostly via email) to their stories. In a small way, I like to think that I make a difference in their lives - if even for a moment.

All of this gratitude doesn't mean that there aren't times when I curse SD and the fact that I have it. I go through my "why me" stages and my "I hate everything and everyone" stages. I have days when my voice is bad and I am catapulted headlong into depression. There are times when I feel helpless to help people who contact me with SD because I simply don't know what to say or do.

Whenever I find myself in an "ungrateful" day, I have to stop, step back, and remember that my ABSD is here for good, no matter how wonderful my voice sounds on any given day. When I remember that I remember to think of SD not as an enemy but rather as a dance partner who sometimes lets me lead and who sometimes forces me to follow. If I can remember to dance instead of struggle, even when I am forced to lead, my SD isn't that bad. It is when I put up a fight that SD amps up the intensity to prove who is boss.

So, even though I don't usually know the steps, I keep dancing.


Voice Update: Well, speech went well and my voice is doing really awesome. I am only at about 85% of where I was before I decided to be a dork and stop doing my exercises regularly but . . . that is better than nothing. I am still determined to get a handle on these exercises and massage so that they are a part of my routine that I do without thinking. It isn't looking too good right now but . . .I am really, really stubborn!


Flea said...

You're dancing beautifully. Keep up the good work!

Mental P Mama said...

That attitude will carry you through it all. And by the way, stubborn is good.

Daryl said...

Sounds like you are learning to follow as well as lead ... congrats and keep up the good work.

I told you once in a comment that my aunt had this too and I know she would have tried hard to have more voice if only she'd had the help you do!

Anonymous said...

That was a really nice post and I hope all those people you mentioned get to read it.

Anonymous said...

I wish my speech pathologist had felt she could help me. After they had me go to the hospital and had me do these tests on the computer, my doctor said that speech therapy wouldn't help me. Your story makes me wonder...

I haven't been to the SD site in months. I ignore the new topics on voice matters. I let people think I'm sick. I'm not depressed... just avoiding. I wish you could show me the exercises you do.

imbeingheldhostage said...

Funny you should choose this topic for today because when I clicked over here, knowing you give voice updates, I thought "I don't know if I would be so strong" (I tend to go to bed when things get rough). Your tenacity is amazing and I am inspired by you!