A letter to my younger self

Dear Sophia,

It's the future of you! Today, I'm here to tell you how far we've come and how it's worth it. Recently I had a conversation with an older woman with epilepsy, and all I heard from our conversation was the negatives. Nothing positive. I want to change the narrative that this disorder is impossible to live happily with. I want to change YOUR perspective on your illness. I'm writing this in my timelined order, so if it doesn't make sense, it will! I promise. And even if it doesn't seem epilepsy related, I promise it will be.

Let's start from the begging. The school was hard for us; it still is hard for us. We've never excelled at learning, but we have learned to be good humans toward others, and in this day and age, that's something that many can't learn. We've learned to be emotionally available to others and stand up for ourselves. People will try to walk all over you, but you will continuously stand up for yourself and put the people who don't believe in you in their place. Mom taught us this at a young age, and I am so glad she did. The things you are embarrassed about now will lay the foundation for what you do today. Things like being sensitive and overly emotional helped you start Milo&Me, but it's also the reason people like being around you. Turns out, people like people who care.

Middle school started, and man, it was hard. You had begun to feel even more stupid than you did before. This time, more people were saying it. You made some good memories, but let's face it. Nobody cares about middle school! When you're 30, and someone asks where you went to school, they aren't talking about middle school. You met new friends, lost some friends, and spent most of the 8th grade crying about not wanting to go to school or take the bus because your friends decided to ice you out. At this point, you had tried what felt like the millionth medication, and it was hard.

Your medication making you lose weight was difficult. It STILL is difficult; we've been off it for five years. It's a learning curve of not feeling hungry, being medication shamed by friends, kids calling you ugly, your collar bones being noticeably out, and waking up shivering every morning. I want to remind past me and present that it's not worth missing. It wasn't a healthy or sustainable lifestyle to hold on to. After publishing your last blog about body image, you were nervous. Thoughts like "Am I revealing something too personal" raced through your mind, but then. You got positive feedback and the biggest hug from someone you view as family. "I love you. You are beautiful" was one of the first things you heard Saturday morning, and now I continue to say that to you because it's hard to remember, and I want you to believe it.

Woohoo! We graduated middle school! Graduating middle school was rewarding because we started homeschooling after this! This was when you started writing down how you would begin to Milo&Me. Initially, we were thinking too big, so it took a few tries before committing to it during the pandemic (spoiler alert!). During this time, you and Mom were driving every other day for six months for neurofeedback. It was a new alternative to medication. It was supposed to rewire my brain, not to seize. Unfortunately, we were yet again another tough case. However, you enjoyed it because you got to watch the office! During this time, our anxiety went through the roof. Leaving the house became hard, and sleeping also became difficult. This anxious period lasted for about a year. We are very grateful that we can say it only lasted a year, as other people constantly live like this.

At a crossroads, yet again. We switched doctors for the last time. Finding our current epileptologist was the biggest blessing. He's sharp and remembered our name without even looking at the chart, and did I mention he's 83? He was the first neurologist.

(epileptologist, actually) to say the words we had been waiting to hear "Let's try to get you off meds." You were scheduled for an EEG immediately, and you told everyone and their mother that you would get off meds. In March, the EEG was scheduled you were told by another neurologist on the floor, "I don't see why not, but let's double-check with Dr. M beforehand." Indeed you wouldn't be told something that wasn't true. You were at the grocery store with your mom, telling her to buy you a congrats cake. An hour later, you got a phone call. All to hear the most awful words, "Let's stay on and wait." We only remember a little from that time. Honestly, I erased everything after that phone call. I ran upstairs and just cried. I couldn't stop. That's all I remember from that time. My timeline can only remember: before the call, the news, short moments in between, and feeling better.

Six months later, you were able to wein off meds. During this time, you also planned your first fundraiser for epilepsy. We learned we love fundraising! And we also learned to keep all our positive energy stored in a box and kick it into a deep basement. Not my favorite tactic, but I was terrified to go through the same thing again, where I tell others I'm off meds, and it doesn't happen. Well, guess what happened! Dec 2nd, 2020, WE GOT OFF MEDS! It's been two years, almost three now, and I continue to be prouder and prouder over this accomplishment.

Two years later, you started the Milo&Me teen girl group chat. Something you had been terrified of doing. Somehow, people loved this idea and began to join! After 15 girls had joined, you wanted to send them gifts in time of need—something we would have wanted two years ago. So, we started going to farmer's markets and raising money to send them care packages in times of need. You've rebranded the products you sell to raise money quite a few times now but are finally happy with how it all turned out! We look forward to meeting new customers and staying with the same vendor friends. First, I know what you're thinking "whaaat, me? enjoy talking?" yes. We are very social now- it's crazy! As for the new friends you made, you have excellent taste because they are all bakers!! You started sending care packages left and right and eventually started making your care package contents instead of helping your friends do them.

Last September, you were invited to be a FEATURED speaker at the CT epilepsy gala. The last time we had ever spoken publicly was, well, in 8th grade. November couldn't have come faster, and you killed it. You got a STANDING OVATION!!!

Then, after the gala, you were nominated to go to DC through the epilepsy foundations teens speak up program. I met amazing people and learned to speak to lawmakers about changing epilepsy laws. DC was the most free we had felt. It feels like we lived a lot of our teen years acting older than we were. We were 16 going on 26. DC showed you something you love, but you came back home to CT a new person. You came home with a clear head, which led you to make Milo&Me better.

And that leads us here. So, can I say without a doubt that this experience has been absolutely easy, and I would recommend that others go through epilepsy? No. It wasn't easy. At all. But, I refuse to say this was a negative experience altogether. Are there negative moments? Yes! Does it suck not being able to drive? 100%. Did I find my passion? 110%. I can confidently say I would not be the young woman I am today if I didn't experience any of this. It's not worth it going through life feeling like this experience is miserable. When talking about epilepsy to a child with epilepsy, I have never said anything negative. I will mention that there are hard parts, but they make it worth it in the end, and that the easy route is boring. Today, I'm repeating that louder for my younger self. I wish she had someone like me. Honestly, I don't know why I still have seizures. I do know, is if I'm going to continue living with this, I am going to change how the world perceives my illness. I am ready to change the world… ok, ok. Maybe just Connecticut- we will talk about the worldwide logistics later!!!

xoxo,

Sophia&Milo