Epileptic Elle Woods has entered the chat...
Hi everyone! Happy March. Last month has been very hectic for me with fundraising, senior pictures, my 18th birthday, and, oh- did I mention I spoke to Congress about making Connecticut a seizure-safe school state? Let's dive into my experience on "the hill" and the conference.
If you follow us on Instagram-, if not, what are you doing!? You would know that in November, I was nominated by the Epilepsy Foundation of Connecticut for the Epilepsy Foundation of America's "Teens Speak Up & Public Policy Institute." This opportunity was for me to get a chance to speak at Capitol Hill & to meet teens all over the U.S. who also have epilepsy. During this program, I was taught how to talk to representatives and senators about increasing epilepsy funding, joining the (new) National Epilepsy Caucus, and other essential epilepsy issues. It was a process, and I was so nervous going into it.
The day I found out I was accepted, I was actually on the phone with my boss- who is basically my family. I got the acceptance email, screamed, and ran into the kitchen. I ran to my mom and hugged her when I found out the news and texted my best friend, Hannah (who was in our group chat) the news! When Hannah found out, she told me her parents would let her visit me from California to D.C.! The good news kept getting better!!!
After this, I kept preparing myself in any way I could for my trip to D.C., although I would be learning most of the information there. Finally, the day came for me to pack my bags and drive to D.C. with my mom, or as many others call her, "Queen Lisa." The trip from C.T. was only 4 hours, and it went by very fast. By the time we arrived, Hannah's 6 HOUR FLIGHT had landed. I'm not going to lie, I hate planes- so I found it pretty impressive that someone would go on a 6 hour flight just to meet me. Now, listen- I'm usually not a dramatic hug runner type, BUT Hannah and I have talked daily for a year. It was time for a dramatic hug run, which I successfully did- or, as Hannah likes to say "NFL tackle." We all had dinner reservations at this fancy place that night, but we canceled, stayed in our pajamas, and ordered room service! I liked it better that way; we were all exhausted.
The next day, Hannah, Queen Lisa & I woke up to explore Georgetown before the conference! After some coffee, shopping, & exploring, we headed to the capitol and saw a few monuments. Then, we returned to the hotel, where I got changed and put some makeup on. I was so nervous at this point- my stomach was in knots. When I was in school, I often had my peers call me dumb or stupid. Epilepsy is the one thing I know a lot about, and I was terrified it would happen again. I was going to be looked down as dumb.
All the parents and teens met in one big conference room; my mom and I sat next to Alexa & her mom. We started small talk, and when the teens were told to separate, Alexa and I walked off together. We made sure to stick together, so we sat together! Once we sat down, we had 2 other girls join us, Mika & Nidshi, and then a few minutes later, Sole sat next to us as well! We all hit it off instantly! We started chit-chatting, and we all had so much in common. Once class started, we heard a few people share their stories, and it was very inspirational. Being in a room filled with people with the same condition as you but with different stories is crazy. It truly is a wake-up call that only some have the same story. I would have never noticed any of my peers were epileptic if I saw them walking down the street, which I hate to say, but it's true! You truly never know what anyone is going through.
Then, we all practiced shaking hands and what we would ask our legislators. After we practiced, there was time for a few more people to share their stories, so I did! I'm not going to lie; it's more nerve-wracking speaking in front of 50 teens than 300 adults. I told them about my journey & Milo&Me. And after that, I showed the class how to talk to representatives alongside another classmate of mine. After class, Mika & I made plans to get coffee the next morning before breakfast. So, I went to bed pretty early after talking to Hannah and started the day all over again, but this time at 6:30.
I woke up at 6:30 to get ready to meet Mika at our new favorite place, Tatte. We met in the lobby and walked on down. I'm not going to lie; I felt like the main character during this trip. We grabbed some coffee, hot chocolate, and breakfast to find out we woke up a little too early- but it worked out because we got to sit down and enjoy the atmosphere. We then came back to the lecture in perfect timing! We met the other girls, and class started.
We listened to more stories and shook some more hands. I'm not going to lie; it was a long day, and we only had five 15-minute breaks. Our day was 7 am to 7 pm. It was a lot to handle, especially considering sleep triggers many epileptics, including myself! By 10:30, I was exhausted. We took a break and returned to our rooms to get more snacks. We listened to more stories and learned how to ask for more awareness & funding.
Lunch was around 12:30, and we went down the street. We came back, and there was an award ceremony for a girl who had done TSU a few years ago and had made such an impact in her community. She gave a very inspirational speech. After her speech, we returned to the teen lecture and met the parents again.
This is a fast version where I only go over what we did in class sometimes because it was mainly going over the same thing. I left the lectures 30 minutes early to nap, especially because I didn't need to be there. A little later, the girls met me at my hotel room, and we got ready for the epilepsy party! We danced, took lots of pictures and then I met Hannah for dinner! She got a burger, and I ate her fries, see? Together for only 2 days and we complete each other's sandwiches! Lol.
I caught up with Hannah on everything that happened throughout the day, and she helped me write down my notes for when I spoke to Congress. Then she and I practiced together- she played a very good senator, lol.
The next day, I met Nidshi and Mika for coffee and breakfast. We kicked off our day on "the hill" with an award ceremony and welcoming the Republican and democrat representatives for the new National Epilepsy Caucus. After that, I said goodbye to all my friends since many left after they spoke to Congress. It was bittersweet because it felt like we got to know so much about each other in just the span of 2 days.
I got ready, got another coffee, and Hannah met us at the hotel. I prepared myself to meet with my first senator, although I didn't get to meet with him- I got to meet his beneficial assistants. I talked to them about the importance of making C.T. a seizure-safe school environment. I told them my story and how, although I love my work through Milo&Me, I shouldn't have to. I should be able to get diagnosed with a condition and not worry about the stigma and ableism surrounding by this condition. I should just be able to be a kid without worrying about breaking the barriers around epilepsy. I repeated this story to all the senators and reps I spoke to.
All of my meetings went well, and everyone was eager to help make this change in the epilepsy community. I'm very excited to see their change when I follow up with them. I also just remembered that I need to send them some Milo bookmarks, which will hopefully be sent in the mail sometime this week.
For those of you who don't know, when you speak at the hill you don't go into the big capitol building (this is what I initially thought). It's called the HILL because there are different buildings for senators and representatives ON A HILL! Who knew? So I walked over 12 thousand steps that day because of walking all around the hill. Hannah, Mom and I were EXHAUSTED and STARVING when we got home. So, we ordered pizza. And then we took the BIGGEST nap known to man. As the night went on, I had to say goodbye to Hannah since she would be leaving early that morning to go back to California (BOOO).
This trip ended up being one of my favorite trips yet! For the first time in a long time, I felt free. Free from anxiety, free from adulthood (I know, I just turned 18 last week, but I've always been very mature. These past two years, I felt like I grew up too fast- it was nice JUST to be 18) free from perfectionism, and free from teaching! I got to know so many people and their stories, and I even met someone- whose story I'd known for quite a while! The fear I had about being seen as stupid wasn't even a thought that crossed my mind anymore; it proved to me that I got to rewrite my story. I got to prove everyone wrong!
So, a state that once seemed sooo boring to me at the end of the day became the most influential. Who knew?