A LETTER TO MY YOUNGER SELF
This post is sponsored by Eisai
At the onset of my epilepsy, all I could remember is that I was headed to recess and boom! Next thing I know, I woke up in a hospital bed. I didn’t recall anything else that happened to me after heading to recess. Even to this day, I don’t remember it. That particular seizure kept me in the hospital for a week. It took me an entire week to regain my strength and become my old self again. After recovery, I didn’t have another seizure for an entire year. I almost had forgotten about that seizure until one day I went into status epilepticus. The seizures kept on coming non-stop without a warning. Again, I don’t recall much about that day when the seizure returned. However, from that day on I was diagnosed with epilepsy. I’m not sure if life changed for me, but I had a new normal. I had so many ups and downs over the years, but I try not to let my epilepsy stop me. It was hard and I’m so grateful for everything. I wanted to write a letter to my 9-year-old self. And give young Derra a heads up that life with epilepsy will be just fine!
Hey Derra,
I know you just had your first seizure. And you don’t know what happened. That’s ok, I’ll fill you in-you had a seizure in the snack line at school. It isn’t the end of the world for you! Ok?! You will stay in the hospital for a week and fully recover. You’ll be back to yourself in no time. But, within a year you’ll have a pretty bad episode (status epilepticus). I know that sounds super scary and it will be at the time. But you won’t remember a single thing. You’ll feel the aftermath which is a horrible headache. Then you’ll be diagnosed with epilepsy from this point on. Don’t look at it as a bad thing. Accept the diagnosis. Not only accept it, but learn from it.
Now, you will experience a “new normal” that you will have to adjust to. Are you ready for it? I hope so. You will have an epilepsy doctor which is called a neurologist. Please be nice to your new doctor. You will have to start taking epilepsy medication. Let’s be honest, you may not want to do it at first. It will be a struggle for you and your parents, but it doesn’t have to be. Take the medication for yourself. I’m telling you about this because you will find it hard to accept your diagnosis. Not taking your meds will not get your “old normal back.” It will just delay the process and make your epilepsy worse. Just know that your medication prevents you from having a seizure. Take the medication!
Your parents are afraid to death. They don’t know what to do. At first, this will be hard for you and your parents to adjust to. Ask your parents to seek the very best neurologist, join support groups, learn about ALL the medications before all the trial and errors. Have open conversations about epilepsy. Check out all the side effects of the medications. Help them. Tell them to have questions for the doctors! Be strong and communicative for your parents so they won’t be so scared. Tell your parents to get you a neuro-therapist to help you through this journey.
Be fearless, love yourself, be vulnerable, and YOU ARE NORMAL!! When you first get diagnosed with epilepsy, you want to go into a shell and hide-DON’T! Keep your playful personality and don’t feel so self-conscious because of your epilepsy. You will start to feel distant and reserved because of it, change that feeling! You are so fearless. Now, enjoy your childhood. Make sure to let your teachers, friends, and family know what to do when a seizure occurs. Don’t let anyone treat you differently because you have epilepsy. Speak up and let them know exactly what epilepsy is.
Having epilepsy isn’t a curse. Don’t ever feel like it is. You have the power to start now to be vulnerable with others about your epilepsy journey and spread awareness. I know you are only nine-years-old and you don’t know how to feel. Know that your vulnerability is your super power. Being able to accept yourself as you are is an amazing strength. You won’t need to ever hide the fact that you have epilepsy. And don’t! Be proud. Stand up. Because at the end of the day you have epilepsy, it doesn’t have you!
Just know YOU ARE NORMAL! Don’t let anyone tell you differently! Your normal may look a little different. Be the one to spread awareness about epilepsy. You will experience times where you feel different and that’s ok. Don’t let it keep you from your happiness, who you are, and your goals. You are beautiful inside and out. You can do anything you set your mind too (for real). You are fearless. You are an epilepsy warrior. Love you kid!
You got this!
Derra Howard 35-year-old Me
Now I’d love to hear from you. Is there anything you wish you knew when you were first diagnosed with epilepsy? (ie. if you knew then what you know now, would you have done anything differently?). If you’re interested in sharing your story, click here to learn more. Managing epilepsy is an everyday thing—but lapses can happen. To learn more about epilepsy visit Epilapsey.com.
At the onset of my epilepsy, all I could remember is that I was headed to recess and boom! Next thing I know, I woke up in a hospital bed. I didn’t recall anything else that happened to me after heading to recess. Even to this day, I don’t remember it. That particular seizure kept me in the hospital for a week. It took me an entire week to regain my strength and become my old self again. After recovery, I didn’t have another seizure for an entire year. I almost had forgotten about that seizure until one day I went into status epilepticus. The seizures kept on coming non-stop without a warning. Again, I don’t recall much about that day when the seizure returned. However, from that day on I was diagnosed with epilepsy. I’m not sure if life changed for me, but I had a new normal. I had so many ups and downs over the years, but I try not to let my epilepsy stop me. It was hard and I’m so grateful for everything. I wanted to write a letter to my 9-year-old self. And give young Derra a heads up that life with epilepsy will be just fine!
Hey Derra,
I know you just had your first seizure. And you don’t know what happened. That’s ok, I’ll fill you in-you had a seizure in the snack line at school. It isn’t the end of the world for you! Ok?! You will stay in the hospital for a week and fully recover. You’ll be back to yourself in no time. But, within a year you’ll have a pretty bad episode (status epilepticus). I know that sounds super scary and it will be at the time. But you won’t remember a single thing. You’ll feel the aftermath which is a horrible headache. Then you’ll be diagnosed with epilepsy from this point on. Don’t look at it as a bad thing. Accept the diagnosis. Not only accept it, but learn from it.
Now, you will experience a “new normal” that you will have to adjust to. Are you ready for it? I hope so. You will have an epilepsy doctor which is called a neurologist. Please be nice to your new doctor. You will have to start taking epilepsy medication. Let’s be honest, you may not want to do it at first. It will be a struggle for you and your parents, but it doesn’t have to be. Take the medication for yourself. I’m telling you about this because you will find it hard to accept your diagnosis. Not taking your meds will not get your “old normal back.” It will just delay the process and make your epilepsy worse. Just know that your medication prevents you from having a seizure. Take the medication!
Your parents are afraid to death. They don’t know what to do. At first, this will be hard for you and your parents to adjust to. Ask your parents to seek the very best neurologist, join support groups, learn about ALL the medications before all the trial and errors. Have open conversations about epilepsy. Check out all the side effects of the medications. Help them. Tell them to have questions for the doctors! Be strong and communicative for your parents so they won’t be so scared. Tell your parents to get you a neuro-therapist to help you through this journey.
Be fearless, love yourself, be vulnerable, and YOU ARE NORMAL!! When you first get diagnosed with epilepsy, you want to go into a shell and hide-DON’T! Keep your playful personality and don’t feel so self-conscious because of your epilepsy. You will start to feel distant and reserved because of it, change that feeling! You are so fearless. Now, enjoy your childhood. Make sure to let your teachers, friends, and family know what to do when a seizure occurs. Don’t let anyone treat you differently because you have epilepsy. Speak up and let them know exactly what epilepsy is.
Having epilepsy isn’t a curse. Don’t ever feel like it is. You have the power to start now to be vulnerable with others about your epilepsy journey and spread awareness. I know you are only nine-years-old and you don’t know how to feel. Know that your vulnerability is your super power. Being able to accept yourself as you are is an amazing strength. You won’t need to ever hide the fact that you have epilepsy. And don’t! Be proud. Stand up. Because at the end of the day you have epilepsy, it doesn’t have you!
Just know YOU ARE NORMAL! Don’t let anyone tell you differently! Your normal may look a little different. Be the one to spread awareness about epilepsy. You will experience times where you feel different and that’s ok. Don’t let it keep you from your happiness, who you are, and your goals. You are beautiful inside and out. You can do anything you set your mind too (for real). You are fearless. You are an epilepsy warrior. Love you kid!
You got this!
Derra Howard 35-year-old Me
Now I’d love to hear from you. Is there anything you wish you knew when you were first diagnosed with epilepsy? (ie. if you knew then what you know now, would you have done anything differently?). If you’re interested in sharing your story, click here to learn more. Managing epilepsy is an everyday thing—but lapses can happen. To learn more about epilepsy visit Epilapsey.com.