This month, I was honored to speak at a fundraiser for Dystonia. Here’s my speech from a few nights ago.
How do I say this? I was not a huge fan of advocating for dystonia until this year. See, I thought a cure was out of reach and I was really fearful to have hope. I did not want to put myself at risk for heart break. Dystonia had always been a dark spot in my life, it was the first reason why I took a medication for something related to my disability, it was the cause of many difficult mornings because I couldn’t put my shoes on, and then I would consequently spill during breakfast, or after a shower my left foot would be so turned in that I could not walk the ten steps to my bed and my parents would have to carry me. When I put everything I associated with dystonia up until October of last year, dystonia was the worst part of my life.
Then, through a connection of my mother’s friend, Barb. Thank you for what you have done, Barb. I got to tell my story to Congressman Bob Dold. My mother knows me well enough to know I could not say no to me telling my story to an important person. Well Mom, if that was your plan, it worked. The day we met with the Congressman a light bulb went off. Oprah would call it an “ah ha” moment. I figured out if people in power knew my story, it would have an impact on the speed for a cure for dystonia. That day I also met the fairy godmother of the Dystonia Medical Research Foundation, Janet. She seemed to really get me. I also knew that people cared. I wanted to help the Foundation. I e mailed Janet about an internship a few times. OK, I emailed a lot. I finally understood this community, we were not dreaming and wishing, the cure is around the corner, we have a very hard turn to make, we have to pull the steering wheel until it has no choice but to go in our direction.
I’m still scared to hope. It takes courage. Courage I did not have until I realized how incredible this community is. I’m so thankful for the support you all have shown me. I am going to end with a quote from the hit TV show, Glee. “It takes a lot of courage to see the world not as it is, but as it should be.” That is what we are doing tonight. We are changing the world for people who have dystonia and I think that is courageous. Thank you, and let’s have a wonderful night.
Readers, I hope you enjoyed my speech.
In other news, I went to southern Illinois to speak at a conference. I speak at Elmhurst College tomorrow which is always a great time. So, I’ve been busy living my dream! I wouldn’t change a thing.