My mom has a phrase she uses when times get tough. You know, those times when you are so overwhelmed you feel like you can’t breathe, or when things are moving so fast and you get lost and confused. She always says, “Don’t worry hon, give it some time. Everything you’re feeling will be like a blip on the radar.” She means that in the grand scheme of things, what I feel right now is small, minuscule, and soon will be irrelevant. That phrase has carried me through so many hard times, though I still need to hear her say it sometimes when I can’t find the clarity myself. This phrase was especially crucial when I was diagnosed with epilepsy at the age of eleven, as it has shaped not only how I view my epilepsy but also the way I have managed it over the years.
This is not my first draft of this essay. I wrote a few different versions but they didn’t seem honest. The first one was just a series of anecdotes about all the stories I have collected throughout the last decade with epilepsy. That felt strange to me — dwelling on those stories, I mean. I have never spent much time thinking about them or diving into them because I never saw the purpose in that. I still don’t. I also don’t believe there is anything more special or unique or challenging about my life because I have epilepsy, so why tell you just those stories? I mean, we all have stories, and those aren’t the only ones I want you to hear about me! That is why I decided to shift my focus. I wanted to talk about my mom’s phrase: “blip on the radar.” I will let you in on a few run-ins with meds and hospitals because that’s what you’re here for. But I want to start this piece by saying that we have so many choices in life. The most important one we make is how we choose to see things. We choose our own perspective. My mom and my supportive family helped me choose not to put epilepsy as the centerpiece of my life. That is why I will not do it for this piece.
I was never shy about my epilepsy. One day, I walked into middle school with 27 wires attached to my head. Didn’t faze me. Quite frankly, at that age, I didn’t understand why it would. It is called an ambulatory EEG and it is used to monitor brain waves during average day-to-day activities. I thought it was fun that I got to wear a button-up shirt instead of my uniform that day. Anyhow, I always told people up front about my epilepsy, and they always felt weird. And then I had to make them feel less weird about feeling weird. I’ve gotten used to those conversations at this point. Now, I think they are kind of fun. It’s kind of pitiful how easy it is to make someone uncomfortable just by being open.
I certainly had a phase where I rebelled against my epilepsy. But I found so much more peace in embracing it. It took until my junior year of college to really be responsible about all of my medications, to understand that they are not an added complexity unless I make it so. As soon as I became disciplined about my own regimen, I felt less chaos in my life. I felt responsible and in control. There are, of course, so many things that cannot be foreseen or controlled with a neurological disorder. They are unpredictable and frustratingly sneaky. Therefore, just when you think you’ve got ‘em, they run away pointing and laughing. Things like sleep deprivation, drinking, and stress have always caused seizures. So you can imagine how college has been. Even when I live as healthy as I can and say no to partying, I still end up having seizures just because I have to stay up studying, helping a friend, or working. Now, I understand the importance of understanding the nature of these things. It is my job to control what I can, and let go of what I cannot. It is as much my duty to live as a spritely 20-year old, be a good student, and have fun, as it is to take care of my epilepsy. And all of those things are possible by letting go of the things I cannot control. This condition has forced me to be adaptable and to go with the flow. Some might say I am a little too loosey-goosey about a lot of things, but I think I am just understanding of the ebbs and flows of life. Patience and self-compassion are the foundation of a healthy mental and physical lifestyle.
I take 12 pills a day, 14 if you include vitamins. For a long time I wanted more. More just to cover those times when I was tired or stressed. More so I wouldn’t feel any seizure activity ever. More, so the fact that I have epilepsy would disappear as soon as I swallow them. Now, I want less. I want to work with my epilepsy. Balance it with my life. Not suffocate it. I want to live with it, dance with it, and fit it into my life like that last puzzle piece you’ve been looking for. I don’t pay much mind to my epilepsy now. I mean, I manage it, but it is not consciously bothersome or central in my life. Sometimes I can feel a little bit of seizure activity when I am tired and overworked (or maybe a little hungover). I am confident enough to make jokes about it, to laugh at myself, and to be patient with myself physically and mentally. After all, it is a blip on the radar, and so I will keep doing my thing, happily and healthily.
