Embracing Epilepsy With An Epic Mindset
“If I woke up this morning, I’m winning.” Rap lyrics from 2 Chainz that really hit home. Not only do I strive to live each day with a grateful heart, but as someone with epilepsy I go to bed each night knowing I may have multiple seizures in my sleep, if I wake up the next morning, it is truly a blessing.
That’s how I’ve learned to see my life with epilepsy - as a blessing. Every day I choose to focus on what I can do, instead of what I can’t. If you’re out there living with epilepsy, living with seizures in any way, I hope I can inspire you to do the same.
I’ve had an eight-year journey with epilepsy. I developed it in my early 20’s during my football career. I detail my concussion history and the beginning of my experience with seizures and how it impacted my relationships in the piece, “How Football Changed my Life.” It’s been a long road, with some serious lows, but living with epilepsy has taught me so much. It’s taught me that greatness isn’t reaching every goal in life, greatness is the maximum effort you’re able to give - win, lose or draw. Not everyone will beat epilepsy, but I want us all to find greatness in the fight, in knowing we’re trying.
I try to live with an EPIC mindset, and I want to encourage you to do the same. EPIC stands for epilepsy, pride, inspiration and courage. Epilepsy looks different for each of the 40 million people in the world who suffer from it. It’s a chronic neurological disorder that produces brief disturbances in the normal electrical functions of the brain, causing recurrent seizures. Some people are born with it. Others develop it later in life from a brain injury, brain tumor, stroke or other reasons. Some have grand mal seizures, others don’t. Along with seizures, many have debilitating headaches, nausea, memory loss and fatigue.
No matter what your experience with epilepsy looks like, I want you to know people are capable of loving you, and people are capable of understanding what you’re going through. It’s easy to put walls up, but sometimes we have to let our guard down and figure out a way to get through to society, so they see beyond our seizures and realize we’re humans too. We have bills, stress, trials and daily obstacles we face just like anybody else, yet we get looked at like we’re lazy bums. Trust me, I want to go to work, but I don’t want to have a seizure and put somebody in harm’s way. Many of us are unable to work with our conditions, but we still have to find a way to provide and live in a world where money is key in everything you do or want to be.
Imagine, out of nowhere, your body jerking violently out of your control. Or you lose the ability to control your speech. Sometimes you go completely blank, as if you’re stuck in space for a short period of time. A seizure can hit at any moment, at any time. The very noticeable symptoms are hard to hide. We need to spread more cultural awareness of seizures, so people can understand what we’re going through and realize in those scary moments, we need someone to help us, not make fun of us. It’s easy to be embarrassed, but I want to be part of a movement where we erase the shame and realize the epilepsy is not our fault. We didn’t ask for this, but it’s our reality and we have to find the strength to get through it.
I won’t accept epilepsy beating me down or getting in my way of bettering myself. It’s all about going out there and just trying every day. Being misunderstood in society can cause a lot of pain. I walk around looking like a “normal” person. People say I don’t look like I have seizures, I look athletic. While that can be hard to hear, I have to accept that some people will listen when I try to explain my condition and others won’t. The epilepsy community needs to be there to support each other and offer that understanding. We are in a unique position and what we’re going through completely changes lives.
Epilepsy is a monster. It’s so humbling and eye opening to try and understand something you’ve never seen. I’ve never seen someone have a grand mal seizure. It’s amazing when you have people around you who can recognize it and take care of you. I have friends who tell me they caught me before I fell and laid me down because they knew what was going on. It’s scary to lose all control of your body and mind during a seizure, but I’ve learned how to have enough pride to accept help. Let’s all have enough pride to get up every day with epilepsy and try our hardest, but not the sort of false pride where we don’t let people in. It’s easy to push people away because you’re caught up in yourself and your own struggles, but when somebody is there for you, don’t misconstrue it. Try to remind yourself they’re facing struggles as well and you must be there for them too. Let’s have enough pride to be honest about what we’re going through. I want to be able to admit to my wife that I don’t remember things that happened at our wedding. It’s frustrating not to remember, but I have enough pride not to lie, and to own my illness and its symptoms. You must have enough pride to look past people’s opinions about your injury. If you let the negativity bother you, you can lose yourself. Instead, let’s work together to educate people on what to do when they see someone having a seizure.
Finding the inspiration to live each day with a smile on can make all the difference. It can be as simple as starting your day like I sometimes do, watching old Saturday Night Live videos or Chapelle standup; finding anything you can to make you laugh. If you think of the what if’s they will ruin your day and stress you out, and you’ll be thinking about your potential seizures more than you’ll think about being happy. We have to choose happiness and laughter. There’s so much pain, struggle and adversity that goes into epilepsy that you can lose yourself. I don’t want people to lose their dreams and ambitions because of this disease. Stay inspired and find new things to dream about.
I’ve always been a playful guy. My wife is always telling me to “be serious,” but there is so much going in my mind I just want to play and show my son that everything is OK. Yes, my children cry and get emotional because they have seen my grand mal seizures, but I have to be strong for them. I want to be inspiring to them and use my struggles as a life lesson to show that no matter what challenges you face, you can still get up every morning and do your best to be a good person.
I would encourage you to seek out new doctors and specialists and try to do as much as possible with what you have. I strive to live healthy and live a life of enjoyment to be what I want to be as much as I’m able to. That mentality is why I decided to have laser ablation surgery in the near future. The surgery will remove scar tissue from my brain and hopefully stop my seizures. It’s a risk, and I’m scared – but it’s my best chance to get healthy and I want to make sure I’m doing everything in my power to get better for myself and for my family. I realize the opportunity to have the surgery is a major blessing that others might not have. I know it gets tough, but we need to be thankful and get up and be inspired by life. It’s humbling finding things that make you appreciate life. I truly appreciate being able to walk my kids to the bus every morning, and the challenge of doing (and ruining) my little girl’s hair each day. Even though I have epilepsy, those times are my happiest because I feel relevant and like a real father. Find those moments in your life. I’m also inspired that somebody married me. I’m inspired by the people who support those of us who have epilepsy. It’s a job nobody could prepare for. They see things that are unimaginable, and they continue to love and support us despite that.
People who have the courage to speak openly about seizures can help give us all hope. Some people in society feel like they’re better than you, feel like you’re somebody they don’t want to deal with because of your seizures – forget them! Instead, let’s talk to each other and work with each other to raise awareness because we understand one another. You can push through the struggle. Have the courage to love other people. You get to the point of losing yourself to depression, where you may feel like giving up on life, but you can’t. We can all find a purpose in helping each other. Even though you might not be able to work or drive, you must have the courage to get up and try, because everybody is fighting their own battles, and this just happens to be ours. The fatigue that comes with seizures is on a different level. It’s excruciating, but I love the strength that comes with getting up every day afterwards. We are accomplishing something major just by pushing through our day. I finally have the courage to proudly admit I have epilepsy and I’m not embarrassed anymore, even if it brings out the most vulnerable times in my life.
Everyone with epilepsy: let’s band together to help each other out. Let’s start a movement to let society and the world know we are human, we are struggling just like everybody else. We might look fine, but we’re going through this. I want people in the epilepsy community to know – even if you don’t feel love, even if you feel discouraged, I love the strength and courage you have. I love the fact that even though you are misunderstood you get up every day and try. Let’s continue to laugh and find enjoyment in the little things and try to be the best person we can be each day, realizing it’s a blessing each day just to wake up.
I’m here for you if you want to talk or share your story. You can reach out to me at firstname.lastname@example.org.