Sophia S

5/17/20232 min read

For the first time in a long time, I feel I have found my community in the epilepsy world. Growing up and even up until a few months ago, I had adopted the feeling of "I will always help others; no one will help me." Because the truth is when you're "the help," no one helps you. I constantly reassure people feelings, pains, pressures, etc., and few people do that to me. For most of my pre-teen years, I believed no one would be there for me (outside of my family) if I had to be hospitalized for my seizures. Now that I've grown up and entered my adult years, I've realized I am wrong. I just needed the right people- the right COMMUNITY by my side.

Community is something tons of people take advantage of. Most people won't understand what it's like to feel like you're the only person in the world struggling. If only more organizations prioritized their audience's social and emotional needs over "funding for a cure." Instead of funding for a cure, what about adequate free transportation, school education, and prioritizing epileptics' social-emotional health while growing a community for ALL ages? This is way more beneficial than funding for a cure because we need to start caring for people with this disability.

Now, we all know I started milo&me because I lacked community for epilepsy growing up. Come to find out, a few years later, 815 people on Instagram all live this way or are affected by it. Either way, an online community was made. This weekend, I was surrounded by my in-person community. It was reassuring to feel I found my place! Even though Milo&Me was created for teens, there is something about being surrounded by people IN person. If there were any way for me to make an "epileptic island" for all the Milo&Me girls and me, I would. But, unfortunately, I don't have money like Jeff Bezos to buy myself an island, that darn patriarchy!

So back on track, this weekend was the epilepsy walk. My mom & I invited our many epilepsy friends to this month's walk. We all drove 20-40 minutes to walk together & It was SOOO worth it! While surrounded by people who understand your life experience, it's comforting because you don't even have to talk about epilepsy. It's just nice to know they understand my struggles from a first-hand experience in one way or another. During the walk, I was only surrounded by kind people who made me feel as if I was part of their family—surrounded by people in person (and over the phone) who WOULD take care of me emotionally?

Now, I'm not going to lie; being "the help" still comes with difficulties, often leaving me feeling unappreciated, but I know if I ever have a problem, I can jump right on the phone and text quite a few girls who can help me out, or book a flight for a special Californian who travels all over the world to see me! LOL.

I am at a place where I am MORE than content with my community. As we all know, community makes the world a better place. When we work together, we can change the world.


Sophia & Milo