Monday, February 29, 2016

Moments of Independence

There are moments that define your life. College graduation, having a baby, getting married, or buying your first house are some of those moments. This post isn't about a moment that changed my life; they are about little moments that affirm my choice to live independently. 

First, I got a haircut independently.  After my last haircut, my hairdresser asked me, "why do you still have your assistants come...we're good on our own"? I thought about it. Why do my assistants come? Hmmm...there was no good reason. So this time, I went in the salon and my hairdresser told me how to angle my chair to get my hair washed. I tilt my chair and lower the back a little bit and she can wash my hair. When it's time to cut my hair, my hairdresser moves the normal chair and I roll in. It's pretty typical from there. I go to Salon Efthimia for everything so I knew the receptionist very well and she helped me pay and tip my hairdresser. It's pretty exhilarating to know that I can do that independently! 

The other independent moment was with my doctor. I just needed a refill so I knew it was an easy appointment. The nurse comes in and for a moment, she looks terrified that I didn't bring my assistant in but after a minute of conversation and explaining what I needed, she totally relaxed. When my doctor came in, she said, "I see you're alone today" and she smiled. We talked about the FCC and she was very proud. She joined the hunt to find me a paying job. She did give me a self breast exam; I think doctors will make the extra effort to get involved if you are alone. If you are a person with a disability on the fence about going to the doctor independently, I would give it a shot and have your caregiver in the waiting room. See what happens! 

Most of you know from Facebook, I went to D.C. It was great like always! I already want to serve a second term starting in 2017. The FCC would have to want to continue our Committee so one step at a time. A big thank you to Stacia who made the trip with me!

These moments of independence are so exciting but I actually have more exciting news. After a year and a half of looking, we found a condo in Elmhurst that I love! We closed on it yesterday and it's a true blessing! The woman who owns it now goes to one of the churches I go to in Elmhurst so it feels great to do business with someone who shares your faith. I'm excited and I want to really thank my parents. I am so fortunate! 

Remember when I wrote about meeting Bob Dold? The woman from the Dystonia Medical Research Foundation who joined us suggested I apply for a young advocacy award. I'm working on the application so prayers and good vibes are welcome! Regardless of whether I receive that award, Mom, Dad, Genevieve and I are going to Dystonia Awareness Days in April. This happens to be in Washington D.C. too!

Finally, and this is really amazing and has also has taken some time too but I finally have a website! I know, right? Go to to see it! We're far from done but I feel like I can show it off. A huge and sincere thank you to Kevin for working so hard on my website. Kevin helped me get confirmed in the Catholic Church back in college and now, he is designing my website! It's amazing how God works. Kevin currently works for the Give Something Back Foundation which I am a mentor for. 

I'm starting to see a light at the end of a very long and painful tunnel. I'm getting glimpses of that light and I can't wait to see how bright it is! 

Letting the Light In,

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