My Teens Speak Up experience


Sophia S

3/3/20236 min read

Hi everyone! Happy March. Last month has been very hectic for me with; fundraising, senior pictures, my 18 birthday, and, oh- did I mention I spoke to congress about making CT 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 CT for the Epilepsy Foundation of America "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 US who also have epilepsy. During this program, I was taught how to talk to Representatives & Senators about increasing epilepsy funding, joining the (new) National Epilepsy Caucus, and other essential epilepsy issues. It was a process & I was so nervous going into it.

The day I found out I was accepted, I was 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 & hugged her when I found out the news and texted my best friend, Hannah (in our group chat). When Hannah found out, she told me her parents would let her visit me from California to DC! The good news kept getting better!!!

After this, I kept trying to prepare myself in any way I could for my trip to DC, although I would be learning most of the information there. Finally, the day came for me to pack my bags and drive over to DC with my mom, or as many other people call her, "Queen Lisa." The trip from CT was only 4 hours, and it went by very fast. By the time we arrived, Hannah's 6-HOUR FLIGHT had landed. I hate planes- so I found it pretty impressive that someone would go on a 6-hour flight to meet me. Now, listen- I'm usually not a dramatic "hug runner" type of person, BUT. Hannah and I have talked every single day for a year. It was time for a theatrical hug run, which I successfully did- or, as Hannah says, "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 Gerogetown 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, a lot of the time, I 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 on 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 & I walked off together. We made sure to stick together, so we sat together! Once we sat down, we had two other girls join us, Mika & Nidhi, 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. To be in a room filled with people who all have the same condition as you but different stories is crazy. It truly is a wake-up call that not everyone has 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 someone 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. Speaking in front of 50 teens rather than 300 adults is more nerve-wracking. I told them about my journey & Milo&Me. And after that, I showed the class how to speak to representatives alongside another classmate. 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 & 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. During this entire trip, I felt like the main character, lol. 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. 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 is a BIG trigger to 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 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 short version where I don't go over what we did in class every time because it was mainly going over the same thing. I left the lectures 30 minutes early to nap, mostly 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 & then I met Hannah for dinner! She got a burger, and I ate her fries, see? Together for only two 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 speak to congress. Then she and I practiced together- she played an excellent senator.

The next day, I met Nidhi and Mika for coffee and breakfast. We kicked off our day on "the hill" with an award ceremony and welcoming the republican and democratic representatives for the new National Epilepsy Caucus. After that, I said goodbye to all my friends since many of them were leaving right after they spoke to congress. It was bittersweet because it felt like we learned so much about each other in just two days.

I got ready, got another coffee & 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 helpful assistants. I talked to them about the importance of making CT a seizure-safe school environment. I told them my story and how although I love the work I do 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 this disorder. 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 what change they make when I follow up with them. I also forgot to send them some Milo bookmarks, which will hopefully be sent in the mail sometime this week.

For those 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 this day because of walking all around the hill. Hannah, mom, and I were EXHUSATED and STARVING when we got to the hotel. So, we ordered pizza. And then took the BIGGEST nap known to man. As the night went on, I had to say goodbye to Hannah since she would leave early that morning to return 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, & 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 of 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 soo boring to me at the end of the day became the most influential. Who knew?