Traveling with Epilepsy: My Loyal Companion
Traveling with my Loyal Companion: Epilepsy
by Evelyn Peguero
Traveling with my loyal companion: Epilepsy
My name is Evelyn but I’m better known as Blueve on social media. I’m a 24-year-old Dominican woman and usually, you’ll find me talking and writing about racism, anti-blackness, and afrolatinidad. This time, I’m going to tell you about my loyal travel partner: Epilepsy. At the age of 21, many of you were probably enjoying officially leaving childhood behind and getting the satisfaction to drink legally. In my case, however, I was being diagnosed with Epilepsy. This neurological disorder is actually pretty common, it doesn’t discriminate or make exceptions. I wasn’t devastated by the diagnosis as most people are. Instead, I had a realization: I’m taking my life for granted, taking my health for granted. I rarely exercised, my diet was horrific and I relied too much on medicines. It was a mess.
After the Diagnosis
That’s when I actively started changing my habits, my entourage, my mentality. I said to myself, and let me quote Panic! At The Disco’s New Perspective: “Stop there and let me correct it, I want to live from a new perspective”. You see, with Epilepsy, you could literally die at any minute. My dream life had to start as soon as possible. And it did. Not long after, I started my traveling journey. I didn’t care much about the destination, but much more about it remaining a constant in my life. I wasn’t going to let this disorder stop me.
I REMAIN in Power
I refuse to identify myself as an “epileptic” because in doing so, I’m giving away my power. I deal, manage and live with Epilepsy. It’s important to always remind yourself that you call the shots. Don’t get me wrong, traveling with Epilepsy is a challenge with various difficulties. The first and biggest one is being alone. Traveling solo means I have to be extra careful. My phone background is changed to an image that says I have Epilepsy in at least three different languages. My wallet has a card that says I have Epilepsy, emergency numbers, and what NOT to do.
How does Epilepsy influence my life?
Although my Epilepsy is fairly unproblematic, I’m under strict medication, if I miss a pill, it’ll provoke a seizure almost for sure. So when I travel, I have to make sure I pack my medicine and then some, just in case. Another issue is sleep quality; I NEED my sleep. It’s not up for discussion as one of my triggers is lack of sleep. When I have early morning flights, I have to plan my sleep schedule and stick to it. Also, before leaving for the airport, I make sure I’m in a calm state of mind. The stress caused by the check-ins, time zone changes and boarding is something that I need to keep under control since the possibility of having a seizure while being by myself is something that has been triggering panic attacks for over a year. Mindfulness and proper breathing techniques have been helping me with those.
As you might notice by now, my main goal is to avoid a seizure, especially when I’m by myself, as this puts me in a very helpless situation; I can die, be taken advantage of, robbed and even raped. Epilepsy is considered an invisible disability and the problem with this, is that we are often denied the benefits that public spaces offer to disabled people.
What can you do?
While I advocate for nondiscriminatory treatment when I’m in my right mind, I also ask you to see the vulnerability we are under. Stop assuming we are reckless because we want to live our best lives while living with a disorder. Shaming or making someone feel guilty about something they cannot fully control is not saving lives. Educating yourselves and working on developing your emotional intelligence is what’s changing the game.
I encourage you to learn first aid, specifically to help a person that is having a seizure, I will give you a small list of DO’s and DON’T’s in case you find yourself in the position to help a person that is having a seizure:
DO's when somebody is having a seizure
DO remain calm.
DO protect the person’s head.
DO wait for the episode to be over.
DON'Ts when somebody is having a seizure
DON’T introduce objects in the person’s mouth.
DON’T let them lay on their stomach, put them on their side.
DON’T call 911 or any other emergency numbers if the episode lasts 1 or 2 minutes. Only call them if the person is unconscious and seizing for more than 5 minutes or in the case they aren’t breathing.
One of the benefits Epilepsy has given me is the capability of helping other people that also deal with Epilepsy as well as people who have loved ones suffering from this disorder, writing about this topic frequently.
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