10 Things I Wish I Knew When I Was Diagnosed With Epilepsy

You grew up with an idea of what your life would be like at this point – in your 30s, living in a nice house with a handsome husband and two healthy, beautiful kids. Well, your life didn’t end up that way – or hasn’t yet. It will be hard and often quite scary. But it will get better.

Today as I write this, I write for both of us. I need to recognize these things just as much as you do. Please pay close attention.

Other relevant stories:
• Can a Woman with Epilepsy Have a Baby
• Medications for Epilepsy
• Things You Can’t Do with Epilepsy

Here are 10 things I wish I had known when I was diagnosed with epilepsy in 2010:

1. You’ll wake up every day wondering why this happened to you.

Fight this bitterness and frustration with everything you’ve got. Do it every single day. You don’t have to listen when they tell you, “There’s always someone worse off.” You know that’s true, but it’s really not helpful. It just makes your situation and your feelings less valid. It is, however, up to you to make a better life for yourself and to go after anything and everything that’s going to make you happy.

2. Sometimes people will let you down, but your family never will.

Your family will love you no matter how far you move or how often. And they will love even during the hard times and the times when you didn’t appreciate them. Unfortunately, that happened a lot over the years, but that’s not what matters because they want only the best for you.

3. Your definition of “family” will constantly evolve.

You’ll realize there are so many people in this world who care about you and are cheering you on. You’ll have a “sister” and a “niece” in Chicago, no less your family than if they were your own flesh and blood. “I love you, Caffrine” will be the four most important words ever uttered by a 6-year-old. And Carl — your enormous nephew, the lapdog that isn’t — will become your pride and joy. Before you know it, you will be the most ridiculously proud dog auntie anyone has ever known. When you were sick, tired or sad, Carl was there for you. He helped you do your homework and gave the best kisses. Family is family, and it doesn’t matter when they come into your life or how. They’re there for you.

4. Stop doubting yourself because you’re much stronger than you think.

You’ll see what I mean… one of these days.

5. Having a disability says nothing about who you are or what you can do.

And you can do anything. The only person who doesn’t believe that is you. 

6. It’s OK to love One Direction.

I mean, you’re 31 so it’s weird… but it’s OK. Those unkempt, sloppy little lads have turned out some pretty catchy songs, if I’m being honest. Play them when you’re feeling down. Sing along in the car. It will make you feel better. I promise.

7. You’ll become a runner.

I’m not kidding. It’s something you never thought you would do. Just get started. Just try it. It will make you feel great and gives you a reason to get out and enjoy this awesome L.A. weather (Oh yeah, by the way — you finally moved to L.A.).

8. Whatever it is you’re feeling, others feel it, too, so find ways to share.

What you’re feeling isn’t unique to you or your situation. So many people in this world go through something like this in their lifetime. Finding ways to connect to others will help all of you heal. You’ll find comfort through volunteering, social media, and even writing. It’s
helping you now, as you write this. There are so many people out there who have inspired you and you might someday do the same.

9. You wouldn’t wish this on anyone, but you’ll be grateful for all you’ve learned and all the ways you’ve grown.

You’ll learn to appreciate your family, friends and the opportunities that come your way. It’s going to take time figure out what you want to do with your life, but that’s OK. You will figure it out, just keep moving forward.

10. Don’t ever hide your struggle or feel your story isn’t valid.

Life is hard… It’s very hard. Your story is important and it’s interesting. And as I said before — sharing it might help someone else. Someone out there might find the hope they’ve been looking for, just as you’ve found hope in so many stories shared by others. So don’t hold back, let it out.

Think about these things as you live out your 20s. Don’t try to live up to anyone else’s idea of success. You have everything you need.

And you are enough.

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