On Tuesday I had my meeting with two of the therapists that organize the conference in Athens that I wrote about on Monday. And it went AMAZINGLY!!! Really, beforehand, I thought I had about 15 minutes to speak and now it’s up to 20 minutes about “TS is so much more than tics” and co-morbidity and 10 minutes about a subject that goes very near to my heart: positivity.
I want to speak about how you can have a good and happy life, even when you have Tourette Syndrome because a lot of kids, in my experience, think their life is over after the get the diagnosis. I know that’s not the case and I want the therapists and doctors that actually diagnose those kids telling them that they still can do anything they want. They might have to fight a little harder, but life doesn’t stop after the diagnosis. So you shouldn’t let TS stop you from doing and becoming anything you want.
I really think it’s their job, the job of the people that diagnose, to speak about that and let kids know that there is so much to achieve when you have Tourette. We, as associations or activists can say that, but we don’t reach all patients. The people that diagnose do.
That’s the part of the conference I look forward to the most. And the nice thing about it is that it’ll be the closing lecture of the first day, so people can think about that going back to their hotel rooms. They thought about it to make it the final speech of the conference, but that’s not possible because Mary Robertson will do that speech. But, hey, sounds cool right, I’ll close the first day, she’ll close the second day!
And that’s not even all!
I’ll participate in multiple role plays and an on-stage interview to clarify the things they talk about and to give examples. And it’s not even sure that’s it! They basically took the opportunity of having a patient at the conference to explain everything they talk about with my real-life examples.
I’ve joked about not being able to sit down while I’m there, but I actually think that will be the case! I’m even scheduled in two sessions at the same time, but those sessions are 3 hours long, so they’ll make it work and I’ll just do both!
Something else they’ve told me is that there will be a lot of therapists, not that many doctors (most of them will be there the 2 days after; then there’s a 2-day meeting, which is like the TSA did in NYC in 2009; I’ll go there, too, but won’t speak). The people that’ll be there are mainly the people that diagnose, to me those are the most important people because they speak to every kid that get’s the diagnosis.
Now I have a lot of prep work to do, it’s somewhere in my head, all the things I want to say, but I’ll have to get it out some time before April! The only thing I have on paper now is the final sentence of my second speech, which is about the achievements of Tim Howard, Mariah Cary (Miss Iowa 2012) and, well, now me.
I’ll have a meeting again in the beginning of April to practice the role plays and to do the final preparations.
So a lot of work ahead! Oh yes, and I have to figure out what to wear… I thought it would be one day, so I have one outfit, but now it’s two days! Haha, girl trouble I guess ;-)
Thanks for all the great reactions on my first blog about Athens! If you want to know more about the conference and the meeting after, you can check here (the conference is called “training school” in this link): http://tourette-eu.org/en/meeting/future-meetings/2013-training-school.html.