Dating in the Dark: A MEMOIR ABOUT DATING DISASTERS WITH EPILEPSY, ANXIETY, AND PSYCHOTIC BREAKS

By Jeffrey Demitrack

For many years, Jeffrey Demitrack searched for a meaningful and fulfilling relationship and, most of all, hoped that one day he would find a significant other who understood and unconditionally accepted his struggles with epilepsy. People have their insecurities, and relationships already are hard without throwing seizures into the mix, so his search has been a challenging one. When first diagnosed with epilepsy at ten years old, he knew that society believed many negative stigmas about the terrible illness. This would surely be an obstacle when communicating about epilepsy to dates and potential partners. The stress of relationships, the anxiety of illness, and the impact of seizures on mood and behavior all played a part in making his interactions tough and, many times, traumatic.

Significant others and dates got to witness some of his worst seizure moments. The seizures often came with blood and scars and sometimes got nasty. This is a story that gives insights about overcoming pain and suffering from a brutal and relentless disorder but, at the same time, explores the complexities of intimacy, foreplay, conflict, and the overall process of maturing to be a better lover in a relationship. He details the traumas of epilepsy and the passions of love but, at the same time, explains the confusion and darkness one might find oneself in with such losses of consciousness.

• Language: English
• Publisher: Page Publishing, Inc.
• Release date: Nov 11, 2022
• ISBN: 9781662485848

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Dating in the Dark

A MEMOIR ABOUT DATING DISASTERS WITH EPILEPSY, ANXIETY, AND PSYCHOTIC BREAKS

Jeffrey Demitrack

Copyright © 2022 Jeffrey Demitrack

All rights reserved

First Edition

PAGE PUBLISHING

Conneaut Lake, PA

First originally published by Page Publishing 2022

ISBN 978-1-6624-8576-3 (pbk)

ISBN 978-1-6624-8584-8 (digital)

Printed in the United States of America

Table of Contents

Introduction

Chapter 1

Unable to Adapt

Chapter 2

Carelessly Courting

Chapter 3

Confusion to Completion

Chapter 4

Horrors from the Helpless

Chapter 5

Make Her Sick, Make Me Better

Chapter 6

Finishing Out the Semester

Chapter 7

Finishing College

Chapter 8

Discussion with Katey's Dad

Chapter 9

Upcoming Plans

Chapter 10

The Sounds of the Train and the Girl Getting Off It

Chapter 11

Dealing with Sickness

Chapter 12

It's Not Just Me

Chapter 13

Search and Rescue

Chapter 14

Empty Picture Frames

Chapter 15

Arrival in Cambridge

Chapter 16

Cries of the Night

Chapter 17

Goodbye to Katey

Chapter 18

Loss and More Loss

Chapter 19

Things Were Lost

Chapter 20

Going Out with Ana

Chapter 21

Visit from Jack

Chapter 22

Moving Back to New York

Chapter 23

Time Spent with Elisa

Chapter 24

Thought It Was Jack, but I Was Back

Chapter 25

She Felt Trapped

Chapter 26

It's like Rape

Chapter 27

Meetup Group

Chapter 28

Working after Hard Weekends

Chapter 29

Public Disorder

Chapter 30

From Urban to Rural Life

Chapter 31

Same Old Melody

Chapter 32

The Softer Song

Conclusion

Acknowledgments

About the Author

Introduction

My story isn't easy to tell. It's hard to put into words exactly what I've felt or experienced, and some moments are simply too graphic to describe. I still thought I'd give it a try because epilepsy is something I'm stuck with for life, and that's something I can't escape. I hope my story helps open up a dialogue about this disorder and gives people a chance to relate to it in a way they might not have previously. Epilepsy hasn't gotten the attention or funding it deserves, but as the public hears about how common it is and sees famous people whose lives it has touched, there have gradually been more and more people taking notice.

This book is about a unique subset of the seizures I've had while suffering from intractable epilepsy while exploring my sexuality. The word intractable is stuck in front of my diagnosis because it means that my epilepsy doesn't respond well to medicinal treatment. I've had thousands of seizures, of different types, but I wanted to describe to you some that were traumatic not only for me but for other people in my life at the time. Whether it was with an exclusive girlfriend, a first date, or others, an epileptic seizure thwarted any plans I had for the evening.

I could share with you seizures from many important turning points in my life, in the presence of family, friends, doctors, coworkers, and more, but I'm just going to stick to stories of my experiences in my search for love—and lust. I make reference to jobs, family, and education because they are all intertwined. My epilepsy and quest for affection and companionship touch all areas of my life.

Although many people with epilepsy have much in common when it comes to triggers, the stimulus that brings it on in the moment and the circumstances that contribute are unique to each individual. Even in some of my more intimate moments, my seizures came and went on their own accord. Sexual contact wasn't necessarily a trigger to my seizures, but some of the things that went along with dating, relationships, and sex could contribute to an episode. Some of my common triggers included heat exhaustion, alcohol, sleep deprivation, and every once in a while, music.

I'm constantly asked how I remember these incidents. I don't know how I look when I'm having a seizure, but many of the feelings I experience, both physically and emotionally, stay with me. Sometimes, bits and pieces come back afterward if I talk it out or think about it for a while, but at the time, when I come back to consciousness, I seem completely confused to the people around me. But however disoriented I was, I still remember parts vividly.

I hope the situations and the dialogue I share from my interactions with women are both entertaining and reminiscent of your own past experiences with love and romance, whether you have epilepsy or not. Most of my dialogue has been taken from old diary and journal entries. Some of it, I'm pulling from memory. Although I tried to be as accurate as possible, I can't guarantee what was said is word-for-word. I wanted to give you the gist of what happened but also add some drama to my story.

Due to the type of seizures I sometimes have, you'll find a unique element to my story. Sometimes referred to as twilight or dissociative states, my seizures often come with auditory and visual hallucinations. As my consciousness comes and goes, I'll find myself speaking into the darkness. When I realize I'm speaking to myself, it's very frightening. Fear comes over me. This usually only happens at the beginning of one of my episodes or in the confused state right after one has just finished, but there are times when my consciousness is in flux too. While it is happening, the conversation seems so real to me. Afterward, I realize it was my mind just trying to make sense of what happened. I must emphasize that each case of epilepsy is unique. Dissociative states and hallucinations are not particularly common with the majority of people diagnosed with epilepsy. However, I believe that life with epilepsy comes with a level of dissociation. That is why these specific experiences are so important to my story.

For those with epilepsy, it's important to know there are others out there having seizures in uncomfortable situations. For those who've never experienced that, I hope to explain some of the issues with communication I've had via my romantic and sometimes very unromantic musings. As we all aim for healthy and productive relationships in our lives, it's important not only to accept the imperfections of one's partner but to recognize the many positive facets that your friends, coworkers, family members, etc. bring to your life. We all experience uncomfortable interactions and connections throughout our lives, and when that happens, please pause. You never know what's been traversing in those shoes belonging to the other person.

The experiences I present here are actual. To protect their privacy, I've changed the names of the women in my story and their relationships to my seizures. No matter how negative, positive, hurtful, or raw, they deeply contribute to the importance of my story. Even when I modified details of a situation, I made sure I took other real-life experiences to fill in the blanks. I hope you will enjoy this deeply personal story with an open mind. As you read, you will see I lost many meaningful relationships on top of other components that would have contributed to a higher quality of life. The more I lost, the harder it was to find relationships. If this book helps one person to understand epilepsy and relationships better, the time and effort to write it was well worth it.

Chapter 1

Unable to Adapt

It's where clear skies end and the clouds begin. It's where the mind bends feeling trapped within.

—Author

There are many types of seizures, and each person has their own way of describing how they feel. It is sometimes very difficult to articulate the complexities of an episode.

Right before drifting off to sleep, I felt a punch to my stomach.

It was my first time sleeping in my childhood bedroom in months. I was home from college for the summer, back in East Hampton where I grew up. As my breath was snatched from me, a pain shot up to my head, jolting my eyes open. Just a second before, I'd been drifting between conscious thought and sleep, but now I was nowhere near any of that. The gut punch had left me gasping for air—and it was just a warning shot.

I frequently experienced these warnings, or epileptic auras, right before bed. They come in many different forms when I'm fully awake. This time I tried to reach for medication but rolled off my bed, whacking my head against the dresser. I'm sure the fall to the floor and the impact of the dresser made a good amount of noise, but no one in the house seemed to have heard.

The painting of a One-Eyed Jack that had been hanging on my wall—the Jack of Hearts—looked down on me and sneered. That's going to leave a bruise!

Who the hell are you? I responded. I get hallucinations during many of my auras, as I drift in and out of consciousness. Sometimes, I get them in the postictal or confusion phase after a seizure too. They sometimes cause intense fear, but other times I only manage to talk myself into something impulsive—and very likely stupid. This one didn't frighten me.

That was a real bang! They probably heard the thump you made from all the way downstairs! Jack went on. The idea seemed to amuse him.

Are they on their way to help me now? Many times, my parents did hear me fall out of bed and would come rushing in to make sure I wasn't banging my head repeatedly on something.

Jack ignored my question. He was having a way better time reminding me about my single state. Wouldn't it be nice to have someone comforting you right about now?

He had a point. You mean one that could keep me from harm? If I had a good girlfriend there with me, she could put a pillow under my head so it wouldn't be rubbing back and forth on the rug, giving me rug burns. I've had people in the past who've done just that.

My room was cluttered and the dresser was hard, but with a few twists and turns, I maneuvered myself away from it. Jack shut the hell up, and I blacked out.

When I came back to reality, I went straight to the bathroom, as I always did, to see how the seizure had messed up my face this time. There was a sore spot on my forehead, just below my hairline. I tend to dwell on how long my injuries are going to take to heal, especially the ones that people will notice and get inquisitive. It's not so much that I care so much about what people think, as it is the aggravation of the conversation piece, Jeez, how did that happen? This one wasn't so bad, and I speculated that my convulsions had only been somewhat violent. If they had been extreme, there would have been bruises on my legs too. Even so, my left shin hurt. It bore a smear of blood, and so did my metal bed frame.

Bad, but it wasn't going to win any awards for worst seizure. In the past, I've woken up with a lot worse, like that one time when it felt like a bone in my leg or foot could have been cracked or the time I broke my toe.

The conversation I'd had with One-Eyed Jack during my seizure stuck with me, even though in my moments of clarity, I know it hadn't been real. It had felt real enough at the time, and the words nice to have someone made an impact. The best thing would probably have been to sleep in and let my bruises heal, but there was so much activity in the heart of the Hamptons at this time of the summer—and so many partying and having a good time out there, eager to make that real connection.

It wasn't as though I was planning to catch up on school assignments; whenever I came home on break, I avoided the stack of textbooks on my desk. There was much more to do and little time to do it in.

* * *

Even though my hometown was a busy resort in the summer, our street was somewhat removed from the popular beaches. No matter how prepared we thought we were for the sheer volume of people who came every year, swarming like ants over the sand dunes and spilling over the sidewalks while shopping and clubbing, it was still always a shock to me and even a good number of the locals.

But there was action there, so there I wanted to be. I drove to the closest ocean beach away from town. I had just suffered a seizure, so driving was the last thing I should have been doing, but I wasn't thinking clearly. More specifically, I had this impulsive drive after a seizure to do something pleasurable. The beach was among the most popular beaches in the Hamptons for tourists, so it's impossible not to find people searching for a good time. I wish I could walk on the beach all day; I could participate in the fun activities those people do, in and out of the water. It would be a great place to make connections and find positive energy. But I can't do that with the medications I'm on, because they make me oversensitive to the sun and heat.

I parked in the visitors' lot and started walking around on the sand. I made it a point not to get too far from my car or caught up in the mull of the crowds. After sitting down in the sun for no more than a half hour, I started to feel light-headed. More alarming to me, though, sight and sound were becoming enhanced. The sun seemed brighter, and the voices around me seemed louder. The sand under my hands felt hotter than it did a minute ago too.

Everything felt slightly different than it should. I get these small seizures shortly after a big one. I didn't want to have this small episode on the beach or in my car, so I thought I'd let it play out in the beach bathroom. As I entered, other men were coming and going. I tried to splash cold water on my neck from the sink. That helped—but so did shocking myself out of the episode by punching the mirror.

In so doing, I quickly made that crowded bathroom my own personal dungeon. I cracked the mirror with one of my punches and was sure someone would soon alert the authorities to the crazy man in there wrecking the place. I found enough focus to make a discreet exit.

That episode put a strain on my search for a summer companion, which was even sadder because it was, in truth, more of a search for comfort. I was exhausted from my seizure with Jack the night before. I hated the thought of seizures keeping me home isolated from the world and the excitement people should be having at my age. It was also a search to free my spirit. After slightly recovering, I drove away from the beach and into the heart of town. Once there, I started weaving through the crowds, looking for spots to people-watch.

I decided one of the best places to do that is a bench near the Hampton Jitney stop. As the crowds came and went, I sat on the bench examining their faces—their smiles and their laughs. That was rare in this town. I found myself looking into the unhappiness of the faces of the people who passed. This bench was an escape from my unhappiness. What was I searching for? I stared and daydreamed, another side effect of being in the middle of a cluster of seizures. This state would continue for who knows how long. I do know that if I stared too long, I would be back in another seizure.

My thoughts drifted to an enjoyable thought of a girl, Angie, from high school. I liked spending time with her. She was not ready for a serious relationship, or she was saving herself, but I was okay with that. Her laugh was contagious and made me want to be around her. I wanted a girl with a smile and laugh like her. Although I do remember sleeping over her house. There was a party that night, and some of our other friends stayed there too, but I slept in her bed. I remember feeling so excited feeling her body close to mine.

I remember her laughing, but an episode didn't let me enjoy the experience. I started to laugh, but then I blacked out. Who knows what would have happened next. That feeling of missing out on something is one that I'll never forget. The last thing I remember was her still on top of me. With a concerned look on her face, she was doing everything she could to bring me out of that lost state. She was saying my name and waving her hands in front of my face. That was the last time I ever saw her because I went off to college soon after.

As I sat on that bench near the Hampton Jitney, I thought of her laugh that was so contagious. Her smile had the same effect on people. The way she rushed to my aid was a model for what I was looking for. Similar smiles were what I searched for as I continued to examine faces. I had stopped my daydreaming and switched my focus. I was now just looking at those getting off the Hampton Jitney and not at the people passing in the street. It was there that I first saw Danielle. She looked irresistible, though I guess I wasn't in a stable-enough state of mind to make that determination right away.

I stood up, not just to get a better look, but to help me find a way to hover without seeming creepy. I noticed she was getting off the bus with her friends, whose names I later learned were Holly and Jessica. She had her eyes on me almost more than I had my eyes on her. It was as if we were gravitating toward each other.

They all walked with that Fifth Avenue strut, one that exudes confidence and drive, but Danielle's stride was even more distinctive. It was highly unlikely that she fit the profile like Angie of an innocent, small-town girl with a contagious laugh, but I continued on anyway. Our eyes connected, so that small amount of interest was enough. I don't think I had the energy to pass on her and take more time to search. It was like the impulsivity that I was prone to during seizure clusters was playing games with me in more ways than one.

The driver was going to get a bag for her out of the luggage compartment, but before he could put his hands on it, the three girls snatched their bags and quickly turned their backs to him without saying thank you. If I needed concern and caring, I should have stopped myself after observing such