So I was at the conference at 8:30 a.m., a bit early, but I wanted to see the first speech. I almost fell asleep, so it’s good that my sister got me a coke. Starting this day, as you know, I didn’t know when I would speak during the day, either 10:20 a.m. or 1:45 p.m.
The president of the European Society for the Study of Tourette Syndrome (ESSTS) asked the keynote speaker if it was OK for me to go first, and they talked a little and decided that I would go right AFTER the keynote — which is even better (read: more nerve-wracking) than before, because all the people would still be there, instead of being late for my speech (because they wouldn’t have known about it before).
So I sat there for more than an hour just waiting for the keynote (Dr. Robert King of Yale University, who frequently works with the New Jersey Center for Tourette Syndrome, which lets me write on this awesome blog!) to end his speech. He named me a couple of times during his speech, to announce my speech, which was pretty cool.
About an hour into his speech, he said for the first time “to close,” so I thought I would be on soon and I started to get nervous. He then continued for another TWENTY minutes while I was getting more nervous and nervous, because I didn’t know when he was done. My heard was racing, and I actually got light in my head and I tried to do some breathing exercises which, of course, didn’t help.
When he finally was finished, I got up there and just started talking. The only memory I have of that is really a blur and a couple of faces, like Prof. Mary Robertson, a doctor from the Netherlands and a couple others. I didn’t look at my sister and my therapists because I knew they would probably have tears in their eyes of some sort, and I didn’t want to cry myself (and it turned out I was right, and they weren’t the only ones with teary eyes).
There were about 100-120 people in the audience, and ALL the big people in the European TS world (and a couple from America as well) were there. My sister took a picture from the audience, so you can imagine what it looked like (and the picture doesn’t include a lot of full lines).
When I was done, I walked back to my sister, took my phone and the camera she used to make pictures and walked to the back. I felt like I was either going to faint or cry. I was shaking so hard, I thought I was going to drop everything on the floor. I went to sit on the side of the pool, just to calm down and relax a bit.
I didn’t put anything on Facebook or Twitter yet because I didn’t know how to put it in words. I still don’t know — nothing I write covers the feeling I had. I texted a friend, but I guess that was all random words, but luckily she understood what I said.
I got a lot of reactions, of course from Mary Robertson, but even from Dr. King, which was quite funny because he asked for my e-mail address to get me in contact with NJCTS and the Youth Ambassador program. But of course I’m already in contact with NJCTS, because that’s why I write this blog! I gave him my card anyway — can’t hurt right!
In the afternoon, we had the meeting with the different patient organizations, which was very inspiring! We have a lot of great ideas, and hopefully Europe will know them very soon! I love to be in a meeting where there’s been taken action and I know we are going to carry out these idea’s very soon, plans are already made!
June 7, the birthday of Mary Robertson, will — from this year on — be the annual European Tourette Day to create awareness and such. We made plans for this year and for next year as well, and I really love them!
Later, we went to dinner with a lot of Dutch therapists and doctors, and some non-Dutch as well. With the Dutch professionals, I discussed June 7 a bit and what we wanted to do that day. And we made great plans again! It’s a shame I can’t tell you everything, but I don’t think it’s right to put it all online. The important thing is that we are going to join together in making the most out of June 7.
Saturday was a turning point. I don’t even know of what exactly, but it started with a dream coming true and it ended in creating other dreams, making them into plans and getting some action!
I really think that from now on, we can achieve a lot of great things. And I’ll be in all the plans. I now know so many people who all like me very much (which is quite humbling, I must say!) that I know, one way or another, the work will be done and the plans will be turned into action.
They keep thanking me for my contribution to the conference (I even got a really nice handbag from my therapists!), but really, I have to thank them for giving me the opportunity to for fill my dreams and to go beyond them to the point I couldn’t even imagine.
Now, my sister and I will finish off the trip with some sightseeing, shopping and sunbathing, so there won’t be a blog anymore, just the occasional picture on Facebook and Twitter to make you all jealous. 😉
I don’t know what the future holds, but I know now it’s a lot, so this certainly won’t be my last blog on the NJCTS website! I hope you’ve all enjoyed my road to the ESSTS Training School and Meeting, and I’ll post some pictures later this week to round it all up!