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Having Epilepsy and Having True Friends

Friend. What is a friend? My definition: a person who has a strong liking for and trust in another and is the opposite of an enemy. Truthfully speaking, I discovered what true friendship is when I was a freshman in college. As we say, we are sisters now.

People can be very judgmental because of limitations, epilepsy, or many other diagnoses. My friend is bipolar and I'm epileptic. No way are we normal when we're together, going wherever it may be next. When younger, we were sneaky sometimes.

But friends don't need to share having a disability or chronic condition to be friends. That's just a coincidence for us.

Having seizures, finding support

When I had a seizure not far from a high school I attended, the New York Fire Department stopped an ambulance from taking me to the hospital because it was over. I will never forget as being postictal I asked, "Luca, Luca where's Luca?" Maybe it was because he was a friend in my school that I thought he was rather good looking. I'll never know because my usual response is, "Seizure, Seizure! Did I have a seizure?"

When my mother got there, she was relieved that the firemen helped. While waiting, another woman put a piece of paper with her phone number in my mom's hand and whispered, "I run a group." Later on that night, my mother called her. She was also a mother of a person with epilepsy and she worked in Cornell Hospital who had made an all-girls group for teenagers.

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Having other friends with epilepsy

There was a meeting once a month and we went to the next. Kelly was the counselor who ran the group, and she reminded me of the counselor in my school. Both of them used group dynamics when a meeting took place, which I found to be useful. We usually sat in a circle, discussed things, and helped each other, as well as receiving guidance from the counselor.

Sometimes there was a topic and sometimes there wasn't. I met quite a few people there and saw 1 of them every now and then, but that was good enough. I am still friends with a person from that group. We speak to each other happily, try to help each other when we have concerning seizures, and if one of us is down we lift each other up. To meet up is rare, but it doesn't stop us from being friends.

Staying in touch by phone

Most of my, then again, all of my friends live in a different borough of New York. Since COVID, we barely get together in person, but a text or call doesn't hurt. Just because you have not heard from a person for a while doesn't mean they dislike or forgot about you.Try your hardest to stay in touch, whatever that may be.

Finding friends through common interests

Writing poetry, I was introduced to open mic events. At first, I was a little nervous. Not about presentation – please, that's my forté – but in regard to people. But after meeting a few people, I did't feel odd or held back from socializing because, to me, all of us were unique in our own way.

Open mics were great. Except for when I had a seizure on New Year's Eve at the Queens location where open mic was taking place until 4 in the morning. I ended up in Elmhurst Hospital, and that was not pleasurable. When I was contacted by the director of that open mic, I knew they still accepted me – and they cared.

The Bronx Book Fair (which was fabulous) was another place I've met people. Most of whom I stay in contact with. A few I still see every now and then, but when we are all together, it is like a family.

Our epilepsy doesn't make us weird

Some people and places will be comfortable and welcoming, while others feel unforgettable to be at or to be with. And if you feel so different than everyone else because of your epilepsy, in reality, you aren't.

Finding a local spot to hang

Welcome to the Ale House. And welcome is how I feel there. And trust me, I'm not sure any 1 of us there is "normal." I feel like we've all lost our minds. My parents and others say, "You guys are as normal as anyone else. Because there is no such thing as normal." 

In real life, everyone is psychologically off to an extent. All differently, unique in their own way, and here for a different reason.

I love listening to the 90s and early 2000s music from the technical jukebox. Open mic is awesome, swing dancing, trivia, and BINGO, when in the mood. I made acquaintances there and just when I felt like I was getting more connected, COVID happened. Which messed things up concerning relationships.

My friends know about my epilepsy

At the Ale House, some left and some still come. If you have a neighborhood spot like this, there are always new people to meet. And everyone who goes there knows I have epilepsy. Including the bartenders, who have my mom's phone number if there is ever an emergency. My book "Short Circuit an Epileptic Journey" is known by all the regulars.

Even though not everyone will be a friend, there's respect for one another. As well as acceptance.

Meeting new friends at new places

Figure out what place or group for you to feel like no one other than yourself. groups are a good place to look.

If living in or near New York, there is always the New York Epilepsy Support Group – some events are in person, others are on Zoom. But we are always looking to welcome new people. (And other cities and states have support groups, too. Check out your local Epilepsy Foundation.)

Just remember, one friend is enough as long as you're there for each other.

A poem I wrote about friends

A friend is someone that doesn't go against you
A friend is someone that there should be no fights with
A friend is someone who shouldn't throw a fit
A friend is someone who should have pure respect
A friend is someone who shouldn't be a threat
A friend is someone who shouldn't hurt, but help your feelings
A friend is someone that should be worth being with
A friend is someone who should be no bitch
A friend is someone that shouldn't snitch
A friend is someone who should take your side
A friend is someone that shouldn't be the only one in control
A friend is someone who should care and notice when things aren't fair
A friend is someone who shouldn't give you a scare
A friend is someone that should just be there
A friend is someone who shouldn't gossip
A friend is someone that should get rid of it
A friend is someone who shouldn't cause bullshit to happen
A friend is someone that can cheer you up
A friend is someone who shouldn't turn their back
A friend is someone that should just be there

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