What Epilepsy Has Given Me—And Why I Would Not Change My Life
by SaraEve Fermin
I was in my mid-twenties when I had my first seizure—quickly followed by a second, and a round of hospitalizations, monitoring, drug adjustments, eventually leading up to both a partial lobectomy and a Vagus Nerve Stimulator implant. I would be lying if I said that I did not have days when I wanted to blink my eyes in wonder at a miracle cure, one that preferably came in a sparkly purple pill. The truth is, I am grateful for this life, and I remind myself to take pleasure in the fact that:
1. I am more informed about my body than ever.
I am my own best advocate, and one of the ways I practice self-care is by learning about my disease, as well as the human brain. While some doctors don’t like when patients are Google-happy about their diagnosis, I have never hesitated to research every drug going into my body or every procedure I am about to undergo. I am also lucky to have a doctor who will answer all of my questions honestly, without judgment.
2. I know who my real friends and family are.
Life with epilepsy is hard—physically, emotionally, financially. It’s not surprising to see friends drop out of your life because you cannot keep up with your old lifestyle—alcohol and late nights can now be triggers and dangerous to your health. Not everyone understands what it is like to pay up to five hundred dollars a month for medications. Some family members just can’t see you “that way”—in a hospital bed hooked up for EEG monitoring, during a seizure, or out of sorts from adjusting to new medications. But some friends and family will stick by you. These are the treasured ones—the ones who will stay with you for the entire nineteen day brain surgery, the ones who will keep calling when they know depression in a blanket you can’t shake off, the ones who know what a homemade cake can do for the broken down.
This year, I started wearing my hair and scars with pride. First, by shaved off the sides of my hair and then dying it purple, wearing it in a side swept fashion. It is the first time in ten years that I have been able to see the scars that the partial lobectomy left me with—three clean slices. What I once feared I now am eager for people to ask about. Every time someone tells me they like my hair, I respond by letting them know purple is the color for epilepsy awareness.
4. I have managed to become both a full time poet as well as epilepsy advocate.
Being a full time poet is not easy. When I say ‘full time’, I mean that I have no excuses—I can devote a block of time every day to my writing. I have been given various opportunities, through poetry, to advocate for epilepsy as well as disability awareness. I have had the chance to head up workshops on disability, host readings and have even flown cross country to help raise money for epilepsy awareness. All through the power of my words.
5. I am stronger than I ever was.
Every day that I wake up is a day that I defeat epilepsy. It is a day that I win, that I take back control of my life and my person. It is a scary thing, to live with what feels like a time bomb in your brain, one that constantly resets itself. Still, I do my best to live above that fear.