Saturday, May 8, 2010

Down, Down, Down I Go . . .

Hi All!

Greetings from Aurora, Colorado! That is right, I am actually posting something on my blog from a totally different state from the one I live in! Yeah! Thank goodness for hotels with free internet access and computers without people waiting in line to use them!

Anyway, the Regional Symposium just finished up (about an hour ago) and I thought I would check in with my bloggy friends for a bit. Just to say "Hi!" And to let you know that I haven't fallen off the face of the earth. And to make sure YOU are all okay. And . . . okay - maybe I need to vent a bit while I try to make a decision.

Are you game?

First of all, let me tell you that this weekend has been full of lots of very good information. The leadership training day on Thursday - which was to provide additional training to support group leaders, area contact people, and other NSDA leaders - was chock-a-block full. We all learned about the recent initiatives which have been undertaken and the progress on all older initiatives. We investigated a few different areas such as the "virtual support group" and visiting colleges which have a Speech Language Pathology major to talk to graduate level SLP students about Spasmodic Dysphonia.

The Regional Symposium today was also very informative. Three Otolaryngologists from Denver were in attendance and they all presented information on SD, Botox injections, and Surgical "treatments" for SD. These doctors really impressed me, not just for the information they presented but also for their very personable demeanors and their wonderful senses of humor. They answered questions from the audience with empathy and intelligence and they really made the "scientific" portion of the day interesting. Let me tell you, that is important! After the doctors, four SDers formed a panel to talk a bit about their experiences and to field some questions from the audience. It was a day of good information and everything was well done!

***If you want to know more about Spasmodic Dysphonia or if you would like to make a donation to the NSDA, check out this link.

The information was good an the people were wonderful as usual. Well, pretty wonderful. If you read my last post you know that I had some anxiety about this meeting and, as it turns out, I managed to "find" additional anxiety while here. I don't know if it is because I was already feeling anxious about some issues or if I am just learning the "real" deal or what.

Let me start from the beginning.

****The NSDA is a wonderful, wonderful association which is doing a great job helping people with SD and with raising awareness of SD. None of my comments in this blog are meant to negate that fact.

****The people involved in the NSDA are amazing, dedicated people who are doing many good things to help further awareness of SD and to help people who have SD. I am very thankful to have met each and every one of these people and to have had the chance to interact with them. They are a real blessing. None of my comments in this blog are meant to negate that fact.

Okay, that said, let me start.

The people who come to these NSDA meetings (the Leadership Meeting and the Regional Symposium) are wonderful people. They are friendly and nice and generally fun to talk to. Since this is the second year that I have attended the leadership training I recognized many of the people from last year and so I felt like I was just continuing my relationship with them. As I stated in my previous post, some of the people have their doubts about if I really have SD. This year, this issue was brought up again - in a very "gentle" manner - by a couple people. Somehow, despite my anxiety, I didn't mind. Probably because I know that I DO have SD and I have faced these kinds of questions before so I was ready for them. Include the fact that my husband is here and he is incredibly supportive of me!

However, I was totally unprepared to find out that people who are in higher leadership positions in the organization also have their doubts about my having SD and that they have shared these doubts in discussions with other SDers.

Okay. I don't mind that people talk about me. I have come to realize that, for some reason, I tend to be the topic of conversation for many people for a wide variety of reasons.

The fact that the higher leadership factions of the group were openly doubting my SD. That sort of "hit me where I live."

Here I am, passionate about spreading the word about Spasmodic Dysphonia and about helping others who have Spasmodic Dysphonia and my "legitimacy" is being questioned.

If people are questioning me, why do they want me in any kind of leadership position? Why would I want to be in a leadership position in an organization which apparently doesn't support me 100%?

Do they think that I am trying to get sympathy or something so I "faked" symptoms of SD?

Do they think that my speech therapist, who is VERY experienced in dealing with SD, and the Otolaryngologist who diagnosed me, who is also VERY experienced in dealing with SD, are trying to "pull a fast one?"

I understand that currently my voice doesn't sound like the voice of a person with SD. Of course, I still hear breaks and symptoms of SD and Hubby still hears them but, that is because we live with it day in and day out.

Okay - I feel like crying because I am thinking of this. I think I am going to have to finish this up tomorrow or at some other time.

I hope you are all doing really well!


Voice Update: My voice is doing really well. I have been talking more than I normally do during the past couple of days of meetings and I have noticed that I have more fatigue in my voice than normal. I have also noticed more breaks than usual (lately!) but, all-in-all things are going well. I have not done any oral reading while here in Colorado because I figure the extra socialization I do (which, of course, involves talking) more than makes up for that hour of time. I will certainly get back on the horse (so to speak) when we return home.

1 comment:

Coffee Bean said...

Awwww Trisha!!! I understand your anxiety. However, it might help to take a step back for a minute and examine this from another perspective.

You sound GREAT! If I had not heard your early podcasts I might have a hard time believing you have SD as well.

Also, I was told by my speech pathologist and the otolaryngologist that diagnosed me that speech therapy was a waste of time for me.

I think it may be hard for people to reconcile what they've been told, their own experiences with your level of success in achieving your level of quality of voice. To tell you the truth, after talking to so many of the people there today I felt guilty that I sound as good as I do.

There are so many variables that go into each person's case and I wonder if someone who has tried many of the things you have without success finds it easier to say maybe you really don't have it rather than wonder if they really have put forth the effort to improve their own case.

Chin up!!! You have done so much to work through your own case while reaching out to others to support them as they work through theirs. There is just too much we don't understand and I think you are a wealth of information and a blessing to the SD community.

Listening to some of the people speak I felt a bit guilty... even though I couldn't even talk as well as they were several months ago. I wonder if maybe you feel the same on a certain level and that is playing into how you are feeling. You know?

Hang in there Sweetie! And it was super fAbUlOuS to meet you in PERSON!!! Praying for safe travels for you and your hubby tomorrow!