My epilepsy, like so many, is not controlled. Fortunately, most of my seizures are not severe. But my quality of life is not as good as it could be. But there are some things I do that make my life better: exercise, eat well, listen to music, and play the piano.
Exercise and Epilepsy
Exercise and epilepsy–the two seem not to go together. People fear that exercising will cause seizures. In fact, regular exercise will keep you fit and improve your overall health. As long as you know your limits and take the proper precautions, such as keeping hydrated and resting as needed, you will be fine. If you are around water (e.g., swimming pool), it is always good to have a friend or family member available just in case something happens.
I’ve noticed over the last year, since I joined a circuit training class, I am feeling much better I have improved in many ways: strength, balance, and endurance. It is also a good place to share camaraderie with fellow classmates and fitness enthusiasts. Plus, the trainers make it a lot of fun.
Diet and Epilepsy
Just as important as exercise is diet. Not necessarily the ketogenic diet or Modified Atkins diet, although those are important elements in possible treatments in epilepsy. I am talking about your average, everyday healthy eating habits. Choose vegetables over chocolate chip cookies. Of course, everyone knows this. It is much harder to do because sweets are so tempting.
Find your passion
Music is another element in my life that keeps me going. I listen to different types, depending on my mood, but I mostly listen to classical music. Most people would think, That’s for the elite. It doesn’t relate to me.” You’d be surprised at how relatable it is. Classical music is often used in media very effectively. The Shawshank Redemption and The King’s Speech are great examples from the film world.
There’s another aspect to music: playing an instrument. It keeps your brain active, as well works your hand-eye coordination. I took piano lessons as a child, so I had the basics of how to play. I picked up playing the piano again just last year. I started with the beginner’s book. I surprised myself at what I could do. There’s a wonderful sense of accomplishment when you work on goals and you achieve them. I think with music, the effect is more than that, because the music itself stimulates your brain.
When you combine all these elements, I believe you will achieve some sort of happy medium. Although epilepsy is a challenge for all of us, it is good to know there is always support at Living Well With Epilepsy!
My older sister Ellyn has epilepsy as a result of tuberous sclerosis complex (TSC). She was diagnosed at about three-months-old, so living with epilepsy was my normal. And by “living with epilepsy”, I mean watching her frequent seizures, administering a strict schedule of medications, and being hyper-attentive to her needs. It felt as if all my family’s time and energy were devoted to managing Ellyn’s seizures.
While I am proud to now be the Chief Scientific Officer for Citizens United for Research in Epilepsy (CURE), my relationship with epilepsy – and Ellyn – was a struggle. As a child, I resented epilepsy and the way it impacted my family. I resented the cancelled family events, the lack of a normal social life, and the constant demands it put on me. I resented epilepsy so much that many of my friends never knew I had a sister.
While I was never interested in studying epilepsy, I was always fascinated by the brain. My first science project in junior high was on the brain and in graduate school, I studied how hormones impact the brain. In my mid-thirties, I had a life-changing epiphany about epilepsy. At a Society of Neuroscience meeting, I saw a poster presentation featuring the first images of a mouse brain modeled as if it had TSC. I knew how the cells in a healthy brain were organized, and this brain was far from that. Looking at the chaos of this brain, it finally clicked for me – Ellyn didn’t ask for, nor deserve TSC or epilepsy. I stood there in tears because I finally understood.
This breakthrough allowed me to begin tackling my resentment toward epilepsy. It opened the doors to considering how I could support those with TSC and epilepsy. In 2012, I joined the TS Alliance Board of Directors. I had already been advocating on Capitol Hill as a part of this group alongside my mother.
In 2016, CURE approached me to become their Chief Scientific Officer. I already knew about CURE, being from Chicago, and remember my parents sharing their excitement when, years before, when they watched CURE Founder Susan Axelrod talk about epilepsy on a PBS show. I took a leap of faith, accepted the role, and am honored to help drive science toward cures for epilepsy every day.
As a sibling to someone with epilepsy, I want other siblings to know that it’s OK if you feel angry, sad or scared, but I encourage you to share those feelings and not keep them bottled up inside as I did.
Parents, if there’s anything I hope my story can provide is the knowledge that it’s critical to create time and emotional space with your unaffected children for frank discussions. Even if you think your children without epilepsy are adjusting well growing up with a sibling with epilepsy, check in often, listen, and grow together. They may be more impacted than you realize, and it’s never too early to start addressing these feelings.
My relationship today
Today, Ellyn is doing better than ever. She still has challenges and seizures, but she is joyful and full of love, and has an amazing spirit. She tries so hard at everything she does! Ellyn never deserved the anger that I carried throughout my childhood years and I am grateful I turned that negative energy into a positive force.
I still resent epilepsy, but I love Ellyn to the ends of the earth, and I won’t stop speaking out, fighting, and focusing on the research until cures for all who are affected by epilepsy are found.
I have exciting news: I got a new job! My previous one was rewarding but stressful and wasn’t doing anything good for my mental or physical health. Though it was bittersweet, I left to follow what I have wanted to do for years: be a school counselor.
I work at a local high school with 2,000 students. It is so busy all the time and I love it. I can already tell how positive it has been for my health and overall life. I could go on for a while about the reasons I love working in a school (and working in this school). But this piece isn’t about how much happier I am at work! It’s about what I remembered once I started working: I have epilepsy and I need to figure out how I want to deal with it in the workplace.
Epilepsy in the Workplace
It crossed my mind initially because I needed to request off time for the Epilepsy Awareness Day at Disneyland Expo in California (more to come on that in a later post). I didn’t really want to tell my boss about my epilepsy; I had avoided doing so with HR when I applied for the time off directly. He needed to also approve it, however. I told them all it was for a health conference and I was attending as one of the expo participants to help others with their health experiences and to learn more about things occurring in the field. That sounded pretty good to me! During one meeting about it though, I (without thinking about it) bluntly said it was an epilepsy conference.
I didn’t really realize what I had done until after the conversation. I was simultaneously proud of but scared for myself. I imagined what many of us do–will I be treated any differently? What does my coworker think of me now? Do I have to work harder to earn respect? I looked back on that conversation with him and realized how he didn’t appear to treat me any differently, as some people have. Now that it’s been a while since I blurted it out to him and nothing has changed. I get treated with full respect and am given responsibilities just like my coworkers. I was nervous that the topic would get brought up in an awkward way but my brain had another idea (as usual)!
I told one other coworker directly about my diagnosis and she was surprised. She asked a couple of questions but also hasn’t treated me any differently. Since I went to EADDL and used social media to follow my days there, a few more coworkers have found out I have epilepsy. They haven’t said anything and I have decided I won’t either. It’s not something that concerns my daily work life and, to me, it doesn’t need to be given much thought in my workplace.
It is always important to make sure that you are safe in your work environment, so telling someone at work can be wise. But you don’t HAVE to do so (at least in the United States). You need to judge how comfortable you are in the situation. Don’t assume that people will treat you different or will judge you inappropriately. If you work with understanding and kind people, you should be accepted. It is a good opportunity to spread awareness and understanding about epilepsy.
Sunovion is proud to feature #MyEpilepsyHero Whitney Petit, author of this post, who offers a window into the ups and downs she experienced while living a life with epilepsy at a young age. Whether you’re living with epilepsy or a parent to a loved one, we hope these letters give a glimpse into the feelings and experiences common for young ones and the support needed to manage childhood and teenage years with epilepsy.
Dear Young Whit,
I write this letter to you as I enter my favorite time of year. Fall. I love the fall season because it marks the time, whereas an adult, we find our purpose. That thing you’re dealing with now, the constant headaches, the involuntary body movements, the blank stares, the many doctor appointments, those things will be the things that empower us to fight for others in the future. Just stay with me throughout this letter as I reflect on what got us to this point. I’ll hope to encourage you never to give up.
In the 1st grade, you will have to overcome some obstacles. You will experience absence seizures during class times. Teachers won’t understand or even try to understand. Their lack of knowledge will lead them to “correct” you by hitting you with fat pencils on your knuckles. Understand that it is NOT your fault. You are doing nothing wrong. You may feel as if you’re broken or less than. The seizures were setting you apart from the other kids at an early age. Many times, mom would need to remind the teachers that you are living with a neurological condition that you have no control over. Even in those situations, don’t forget to smile. Hold your head up and continue to be that fantastic kid you are. Remind yourself to unclench those fists and take every situation as it comes.
There will be many medications. Work with your epilepsy specialist and take them. I know it’s annoying, but they will help. Treat overnight trips to the EEG labs as an adventure. It will all be worth it in the long run. You will become a dancer and be amazing at it. During the journey of dance, the seizures will seemingly go dormant. You will notice they will happen less and less. You will find freedom but still, operate with caution. Just never let the fact that it can happen at any moment stop you.
Whitney, know that it is okay to tell your friends. Let them know that you are living with epilepsy. Share with them what that means and that you are still the same person that they have grown to know and love. To get the world to understand that anyone with a brain can have a seizure, we must start sharing our story with our peers. By the time you reach middle school, you’ll be interested in cheerleading. In high school, you will take a step back from dance and cheer but find a love for writing and journalism. Hold on to that; it will come in handy in the future. Don’t ever give up on yourself. You are a warrior, a fighter, a champion.
If I leave you with anything, I’ll leave you with this. The best relationship you will have is the one with Mom. She will always be your protector, your fighter, the one who stands up for you through all the storms, the seizures, the recoveries, the doctor’s appointments, the failures, and the triumphs. She will be your haven. Even when you get upset with her for not getting your way, know that it’s always in your best interest. No matter how far you travel, no matter where life takes you or when the seizures come and go, you can always find a home in her.
Remember to learn to take care of YOU before you try to save the world. I promise this will allow you to be a greater champion in the long run! Self-care is the best care, girl.