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.

3. Scars are just tattoos with stories behind them.
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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.

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EFGLA 2015 Care and Cure Benefit to End Epilepsy Keynote Poem

Keynote Poem EFGLA 2015 Care and Cure to End Epilepsy

We all want our children to grow up to be hurricanes, storm chasers, Gods of thunder and movers of the earth. We pack the love notes into their lunchboxes, sign permission slips, shuttle the carpool, do all this knowing so much is out of our hands, that once they leave our eyesight anything could go wrong. We wait for their return, fingers pressed to countertop or hovering over cell phone, eyes on the clock, anticipating the valleys of their voice as they spill out all of the day’s adventures, discoveries, heartaches, denials and successes into our ears.

No one wants to receive the call, wants to hear what happens when your childs brain is the electrical storm, what happens when the world turns all humming glass and scream pitch, the first time the body contorts and thrashes as the minds synapses unbridge themselves and brainwaves become jumping needles. One out of every ten will endure this neurological malfunction in their life time—a seizure.

Epilepsy is defined as “a disorder of the nervous system, characterized either by mild, episodic loss of attention or sleepiness (petit mal) or by severe convulsions with loss of consciousness (grand mal) “. This is the most pure and somehow false definition for such a devastating disorder, one that affects three million Americans and sixty five million world wide. It pours concrete down bubbling vocal cords and plucks banjo with trachea, tearing each breath away. Epilepsy can take colors and somehow turn your stomach, will spill doom down your back in the middle of a Wal-Mart, an LA sidewalk, your morning shower. It can take gravity and spin it on its own head, making a joke out of your once-upon-a-time favorite carnival rides. It can take all your good thoughts and turn them stormchaser as you struggle to piece together hours lost to hospitalizations.

Sometimes, it is the smaller violations that hurt. The way the medications melt away memories, focus; blurs words together on the page. The loss of independence, wondering if you will ever be able to drive a car, own a pet, wake up without an alarm. Your once steady employment slipping away from you, the fear of having a seizure around people you don’t know well enough, and losing the friends you thought you knew. The scared side of humanity that still believes the archaic myths about this disease, the ones who have asked me if epilepsy is contagious, the ones who still call seizures ‘episodes’, as if this life is a television program and we can just change the channel, the ones who still think people with epilepsy can swallow their tongues during a seizure.

But sometimes, epilepsy shows you fight. Consistency. Determination and sacrifice. Love you did not know you were possible of. Loss, but hope. It can be making your neurosurgeon crack a smile, with your head cracked open in a hospital bed; it is the mother that knows every medication their child has run through before responding EMT even asks. It can be a room full of people, with one common goal—a cure. A room full of people who know that one in twenty six people developing epilepsy is too great a statistic, that we can change that number, with specialists, early treatment, proper education and awareness.

I know I am lucky. That the storms did not strike me down until I was twenty three, that the only reason they cracked my head open at twenty five like the most precious excavation site and pulled as much as the disease as they could out of me is because of my team of doctors. That I would not be able to turn my own story into sea glass and so much survival if not for my support system and for hope. Hope that a cure will one day be within our grasp. I have to believe in that.

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National Poetry Month Prompt Central

Happy National Poetry Month!  I am celebrating by writing at least a poem a day.  I am also participating in  a fun challenge called PoMoSco, a found/erasure/mixed poetry challenge.  As if I was not stretching that enough, I want to make sure that my friends  participating in the challenge could find some inspiration.  You will now be able to find the link to my poetry prompts in a button up top.

Happy writing everyone.

Be Amazing.
https://www.tumblr.com/blog/sepoetryprompts

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Things I May Never Understand by SaraEve Daly

ExFic

Daytime drinking on a rainy Monday
is always going to make me think of

my mother.

If you met her now, you would not
have any idea why she’s the reason I
scared myself straight

for almost a decade.

The last time I saw my mother drink,
I bought her a shot of top shelf whiskey
at one of my features.

Like a real fucking grown up.

Born and raised in New Jersey, SaraEve is a performance poet and epilepsy advocate from Union City. She is currently the editor-in-chief of Wicked Banshee Press (2014) and has competed in the 2013 Women of the World Poetry Slam. She volunteers regularly at National Poetry Slams and facilitates advocacy in poetry slam workshops. She is a Stephen King nerd, and writes [H]ouse fan fiction in her spare time. You can find out more about SaraEve by visiting her website – http://saraeve41.wix.com/saraevepoet.

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Why I “Bad Picture Monday”

I want you to know, I hear you, wherever you are.  “Pfft.  I don’t take bad pictures.”  EVERYONE does.  Beyonce does.  Just own it.  You will feel better.  I am sure Beyonce did.

Bad Picture Monday is a Facebook movement liked to The Body is not an Apology, a body positivity project started by Sonya Renee Taylor.  Bad Picture Monday encourages users to post pictures  that they would normal find negate or flawed and celebrate them for their unapologetic beauty.  It has flowered into a great way to purge insidious self-doubting  mind-mines such as “stripes are not for that body type” or “what was I thinking wearing that color?!”

But for me, BPM is something more.  It is a chance to talk about my disability.  More than talk, it is a chance to show what I have been through.  No matter how many medical identification tags, awareness bracelets, or times I dye my hair purple, there is more to me than “I have epilepsy.”

There is no shirt that says “please be patient with me, I am blind on my right side.”  When I travel alone, it sometimes takes all I have in me to not turn around and snap on the people pissed off at me because I am taking too long purchasing a Metro Card.  I am that person who has to stop in the middle of moving pedestrian traffic to send a text message.

It takes a lot of work to overcome ten years of PTSD– from my first seizure at twenty three to the emotionally violent break that lead to me leaving my childhood home at thirty , I spend approximately 2 years worth of time in the hospital on the epileptic monitoring ward, the rest in my childhood bedroom, afraid of seizing.  I was never alone, I was not allowed to lock doors, I was a risk to everyone around me.

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Brain Surgery (Occipital Lobectomy)

BPM let’s me show the world how far I have come.  What is underneath this hair.  What I am living with, what I am fighting for, what I am grateful for every day.

list of disabilities:
Intractable Epilepsy
Chronic Migraine
Aphasia
Partial Blindness (Right Side)
Clinical Depression

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come see me!

I am proud to say that I am competing in the following Women of the World Poetry Slam Finals and would love to see your beautiful face at either of these!  I will have copies of my latest chapbook as well as goodies for sale!

January 11, 20134- Suffern Poetry Slam Presents Special Jan. Lady Slam at Casa Del Sol in Nyack, NY
https://www.facebook.com/events/242933135869234/

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Women of the World Poetry Slam 2013
credit Leigh Ann DiDominico

January 15, 2014- Jersey City Slam’s Women of the World Qualifier
information coming soon!

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We don’t COMPETE, We POEM

two women of the world poetry slam qualifiers within the next two weeks. i have grown very fond of two of the women i am poeming with. that is what i call it when i “compete” with other female poets. we’re just a couple of lady poets, sharing our stories, letting others into our dresser drawers and night gowns, our kitchen sinks and our bathroom floors. we are just saying, come in, the water’s fine.

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