Love Me Steady

Dedication

For all who kept pushing me to write. You know who you are and I love you more than I can say.

PROLOGUE

In the beginning, I believed that life was meant to be successful. Being told I could do anything I could dream of made me have an ego the size of Texas when it came to being the best. If the ones I loved said it was true then it must be, right?

Wrong.

As a kid we all dream big...an astronaut, a doctor, or president of the US of A...and we dream without reservations. But, we all get that wake-up call to reality and I, like everyone else, received my call, too. I was ten.

Different than both my brother and sister, I was the bookworm. Playing tag, running bases, swimming laps? Yeah, they could take all that and shove it. All I wanted was books and information. My curiosity was worse than that damned cat and I was sure that one day it would kill me. If I didn’t know something, I made it my mission to become the most knowledgeable person on that subject. My mistake in this? Not opening my eyes to the world while my nose was stuck in those books.

A September weekend afternoon is where my story begins. My morning started just like every other morning: woke up, ate breakfast, did chores, blah, blah, blah. Nothing special to remember except I began to feel more tired than usual. As I lay with a book on the couch, reading, I remember setting the book aside to rest my head on the end of the couch. I instantly fell asleep. What I woke up to became my nightmare.

This is where I wish it was all a dream. It felt like a dream at the time, but, sadly, it was reality. My new reality. Opening my eyes, I tried to take inventory of where I was and what was going on. Head fuzzy, back stiff, arms and legs not moving. Fear took hold while I searched for a familiar face in the crowd. I noticed the woman who had been taking care of me and my siblings while my mother worked. She had a look on her face that sent chills up my spine. When recognition finally kicked in and the realization that the other people surrounding me were paramedics, I knew something was very wrong.

I heard the counting begin and then I was lifted into the air and moving. As I left my house on a stretcher, I asked over and over again what was going on and no one would answer me. When the stretcher neared the ambulance, I noticed one of my few friends standing on the sidewalk. I turned my head in embarrassment. To my knowledge, I had fallen asleep and woke up on a stretcher. Who has to go to the hospital for a nap?! My confusion was vast. The paramedics must have all had a case of laryngitis because there was no noise coming from their mouths as I asked what felt like a million questions. My cat-like curiosity was getting the best of me and, with no answers; I was in no way feeling safe.

Arriving at the hospital did nothing to help my confusion. I did begin to feel safer but I couldn’t thank the hospital or any of their staff for that. It was all because of my mom. Let me give you a bit of knowledge on that. See, my mom has been my rock. Some may say she even saved my life, literally.

When she became pregnant at a young age, there was only one option according to the fabulous sperm donor: get rid of it. I will forever be grateful for the strength my mother exhibited in that first decision for my life, for me to get the chance to live it. She was in the Navy, far from home, in another country for Christ’s sake but she still made that decision and it is the reason I can tell you my story today. The strength and courage she had that day never dissipated and was always infused in my siblings as well as myself.

Ok, where was I? Oh, the hospital, right. So in comes my warrior of a mother. An instant peace settled over me. Knowing that with her strength there I would survive anything. I will save you the boring details and just get to the point. Epilepsy. A diagnosis I had no knowledge of, but one my mom obviously knew. I saw a rare occurrence for her that day. She broke. I saw the understanding behind her eyes and some of that ego I had about surviving anything left me.

Mom? I had a gut feeling that she had chosen to hold something back from me and I was about to find out what that was.

It will be ok, Nellie, but I need to explain something to you.

Do you remember that fear I had before my mom showed up? It was back times ten, made worse by the fact that it was my mother putting that fear in me. But that stubborn strength infused in me since birth chose that moment to return. I opened my ears to hear my mom tell me how my life was going to be forever changed.

At 10-years-old, my only worries should have been which book to read next and if I would get the latest Barbie doll. Instead, it became a constant awareness of my surroundings. Is this chair too close to the table? How far up is this couch? Can I make it down that set of stairs? Why these questions you ask? Because a grand-mal seizure for me could occur at anytime, anyplace. Without a safe place to land, the hurt certain objects could inflict during a seizure might mean life or death. I was lucky and very aware.

Medication was the answer, or so the doctors said. I’ll admit, they were partially right. With medication, my seizure severity and frequency did lessen but didn’t disappear. And so began my journey.

CHAPTER ONE

I followed Tammy, Cory, and Tessa to our usual table. With my favorite Dallas Cowboys sweatshirt wrapped around my waist, I sat down to lunch like any other day. Talk of the latest debate, Backstreet Boys or NSYNC, began and I was so over it. My statement always remained the same, Justin Timberlake. I believed it was a solid case point and no one could change my mind on that one. So my lunch became a span of people watching...the hotties of the fifth grade at one table, the below the radar crew at another table, and my friends. I guess you could call us the middle class to popular crowd. Coming from a small town, we all grew up together and there wasn’t any real animosity towards anyone in particular. That day changed my view on the previous statement.

The feeling came over me quick. In those days, I didn’t have a firm grasp on what an aura was so the seizures kind of snuck up on me. I had just enough time to grab my sweatshirt from my waist and that was it. Placing my sweatshirt over my lower face to collect the saliva from the seizure that followed the aura, I heard the few words that made me lose the only friends I had.

Look! She’s a mad dog, foaming at the mouth and everything! Tammy stated while laughing. They all followed suit. The laughter grew and drew more attention. My face burned from shame as I watched my life change before my eyes. The friends I thought I knew became monsters to me and I wanted out the horror movie! I started to come back and regain focus and I ran.

Finding the nearest bathroom, I slammed the door open and closed and then dropped down the wall and cried. I cried for the unfairness of having to deal with this disorder. I cried for the loss of friends. I just cried.

Looking back, I know that it was an attempt to lighten the seriousness of what was occurring, but when you’re in middle school, it doesn’t matter. I lost any sense of ego I had that day and it would take me years to regain any type of self-assurance.

Nellie, are you ok?

I looked up into the eyes of the girl who would become my best friend, Andrea Suzanne Carlisle, but I would call her Andy. Her eyes held compassion and an odd understanding of what I was going through. Sitting next to me on the floor of the bathroom, she grabbed my hand and held tight. The pain gripping my heart lessened with the empathy she exuded. A flash of laughter and lightness went through my mind and I smiled at her. Finally, I had made a true friend.

Walking home from school that day, I was on a mission. I needed to find out what was going on with me so I could take my life back. I had dreams and, with that one hand squeeze, my strength was back to pursue them!

Mom! I yelled when I entered the front door. Knowing she was probably just waking up from sleeping after her midnight shift, I gave her a few moments before I yelled again. Mom, NOW!

Jesus Christ, Nellie, you could wake the dead.

She was right. I probably could.

I want answers, NOW!

What are you talking about Nellie? And can you please lower your voice.

I was being a brat and I didn’t care. My stubbornness was back with a frightening force and I would not hold back.

Mom, tell me what you know. When I was in the hospital, you said you had to tell me something but the doctor interrupted and you never finished. I have been so foggy with these seizures that I forgot, but not for good, and I want the truth.

Nellie, sit down. I knew you would remember me telling you that and I’ve been dreading telling you because it would scare you. Do you remember your Aunt Neen?

Of course, Mom. You used to play darts with her every Friday, but what does she have to do with this?

Your Aunt Neen has epilepsy.

What?! Since when, Mom?

She has been an epileptic since she was a teen. In fact, I believe she was just about your age. But, Nellie, that isn’t all.

Well, geez, Mom, you think you can drop a bigger bomb on me? I was full of sarcasm and, she was right, fear.

Penelope Elizabeth, this is serious. I don’t think you understand the extent of your disorder and what it may mean for your future. Your Aunt Neen hides being an epileptic very well, but her past is full of trials and errors of the medical kind that I fear you may have to go through as well.

For the first time, I looked at my mother with dread. What was she trying to tell me? I knew being an epileptic was serious, I mean, duh! But, trials and errors...

I have been speaking with your doctors and they have come to the same conclusion that I have, they can no longer help you. We have an appointment with a specialist in Chicago to talk about the next steps that may be possible.

Mom, you’re scaring me. What steps are you talking about and who is this specialist?

Doctor Smith comes highly recommended. He works in Pediatric Neurology at Children’s Memorial Hospital in Chicago. Nellie, I want you to be prepared. Medication is not controlling the seizures. Surgery has been brought up.

Surgery? Mom, that means brain surgery. You can’t be seriously talking about me going through brain surgery; I’m only twelve years old! My fear had escalated at an alarming rate and they don’t lie about that whole seeing-your-life-flash-before-your-eyes thing. I saw it and it wasn’t pretty. Underneath my fear came the urgency to find out all I could.

You know the family motto, ‘Pull up your bootstraps and get it done’. And that is what we are going to do. I can’t stand to see you live like this anymore and we’re going to find answers. She smiled at me, but I saw the fear in her eyes. Luckily, I also saw that consistent strength or she could have bet that my butt was not going anywhere near a doctor suggesting brain surgery.

CHAPTER TWO

We will move on from all those theatrics and simply say the brain surgery didn’t happen. The doctors decided I was too young and wanted to wait and see if maybe I would grow out of the seizures, you know puberty and all that.

Yeah, puberty was awesome with the boobs and pads, but it didn’t bring relief from the epilepsy. In fact, it made it worse. I did have one thing to rely on though, my friends. Andy had become my bitch-slap reality-checker and I loved her for that. When the effects of my disorder dragged me down, she was always there to remind me that the epilepsy wasn’t going to win this catfight and I better man up.

I got my first chance to man up when Bobby Mills asked me to the junior high barn social. Your typical small town, young adult carnival of sorts, the barn social was my initial adventure into boys and how disappointing they can be. Bobby met me at the dance but that girl on his arm became my first life lesson. See, teenage kids can get inventive when it comes to knocking a girl down and, when you aren’t expecting the punch, it can hurt. What I didn’t know was just how much it would hurt. But, Bobby taught me something I will never forget. He may have been the first to teach it to me but he wouldn’t be the last. Guys can’t be trusted and I stood by that statement because no one had proven it wrong.

With my new knowledge of the jerkiness of teenage guys, I began high school. I entered with my head held high because I had a friend, I had music, and I had hope. New discoveries were being made every day in the world of epilepsy research and, one day, something would come up that would help. I knew it in my soul. I was young and a little naive.

I made the decision to do what I could and ignore the rest. I was good in school. Actually, I was pretty great in school. Taking advanced classes just seemed to make sense. Focus on the positive and ignore the negative. Driver’s Ed came up my sophomore year. That was a hard choice. I knew the truth. As an uncontrolled epileptic, my options of actually driving were pretty slim. One week into the class I made an appointment with my guidance counselor to drop the class. I mean, what was the point? I was never going to drive, but I was going to go to college and that would require the best grades possible with as many extras as I could fit. So goodbye Driver’s Ed and hello Advanced Placement courses and Student Council!

I became a bit of a nerd and a definite band geek. Band was something I could do. There was little physical strain on my body, a bonus because any excess exertion tended to lead to more seizures, and it ran year long. I chose the flute like most of the girls did when band become an option back in 5th grade. High school brought more instrument options in the world of band as it branched out into Marching Band in the fall, followed by Concert, Pep, and Jazz Bands in the spring. As marching wasn’t an option, I picked up a set of mallets and learned every keyboard instrument just so I could stay in the one activity that kept me sane. I became a part of the ‘pit’ and, to be honest, I enjoyed it more than the flute.

My life had become a series of hospital visits for testing and medication trials and I was feeling the stress. My personal life was non-existent. Who wanted to be with the mad dog? Yes, that comment stuck.

During Marching Band season, from Band Camp to Nationals, I was a happy girl. Music helped to take away the constant fear I hid and it made me feel normal, like I could forget about my seizures. After Nationals, however, was a different story. I just didn’t get the same social inclusion from Concert Band and Pep Band only ran during basketball season. Hospital visits kept me occupied after basketball season.

My mom made the best of things...we would pack a bag full of chick flicks and books to take with us on the hospital trips. She became my second best friend but I knew the stress was getting to her as well. I also knew things had to change and, like always, I was determined to make it happen. But, what I believed needed to be changed and what my mom wanted to change were two completely different things.

I had come to terms with my disorder. A kind of peace had settled in me when I accepted that my life would always be saddled with epilepsy. I was going to make the best of it. My mom didn’t want to do that. She was bound and determined to find a cure to relieve me of my seizures. It became the only thing we didn’t agree on.

My senior year of high school had somehow snuck up on me and I had yet to take a chance. Signs for the Fall Ball started popping up around school and I made a pact with myself, I was going and I would have a date. I was just as boy crazy as the rest of my peers, but, it had been pushed to the wayside. Boys weren’t an important piece, or even a needed piece, to achieve my goals of a future on my own so they didn’t matter. Not to mention my ‘guys can’t be trusted’ statement. I had never been on a date or been kissed and I was determined to change that. You could go on a date and kiss a boy without having to trust them right?

Of course, being my typical procrastinating self, I waited until a week before the dance to start making calls. I hadn’t been asked but I knew there were still boys who didn’t have dates so I took control. Pulling out the local phonebook, I started dialing. Who was my first target you ask? A boy of the tall, all-American variety named Gavin McDaniels.

May I speak to Gavin, please? An older woman had answered the phone. I wasn’t even sure if this was his number, but it was the only listing for McDaniels...I took a chance.

One moment please. I heard her tell a young girl, whom she called Brooke, to go get her brother. Score! I had found the right number.

This is Gavin. Good Lord, now what do I say?

Hi Gavin, this is Nellie, from school? Why was I asking questions? Of course I was from school, I mean how many Nellies were there in our small town of under a thousand?

Yeah, ok. What’s up?

Well, I was just wondering, I mean if you want, would you go with me to the Fall Ball?

Umm, well, I really don’t do the whole dance thing.

Damn, I had blown it. Ok, that’s cool. Maybe I’ll see you at school sometime. Click. Breathe Nellie, move on and write down what you are gonna say for Christ’s sake!

Taking a break to listen to my head and write down what I wanted to say for the next lucky boy on my list, I breathed deeply. Getting a life was hard! Okay, next boy on my list. Oh good choice, self! A medium-height, personable, and funny guy named Travis White. Phone in hand, I dialed.

Hello? A deep voice answered on the first ring and I knew it was Travis. I had spent a good amount of time talking to him in class and could pick out his voice anywhere, yet, I still asked for confirmation.

Travis?

This is Travis.

Hi, it’s Nellie! I was wondering if you wanted to go to the Fall Ball with me. I mean just as friends and only if you want to. I was such a dork and an obvious babbler.

Yeah, that sounds okay.

For real?! Brain seriously, this is not funny, don’t play jokes on me like that!

Wake up, genius! He said yes!

After I pinched myself to make sure it was all real, I replied back. Great! I will go get my dress tonight and then call you with the color so you can match! Talk to you soon! I hung up fast so he couldn’t change his mind and went to beg my mom to take me dress shopping. No way was I going to wait and miss out on a good dress. I had a date!

Two hours of trying on dresses later, after finally settling on a navy blue number, I was exhausted. But, I had promised Travis that I would call with the color so I picked up the phone and made the call. I should have just gone to bed. The sleep would have helped to pick myself up after the call.

Travis, I found my dress and it’s navy blue so you can really wear any blue you want and...

Nellie, I can’t go.

It’s ok. It doesn’t have to be blue. Wait, what?

I said I can’t go. I’m sorry, but I can’t. I knew it was too good to be true. Inside alarms went off and I prepared myself to accept that not being able to go was more than likely code for, I forgot you were the weird chick and I don’t want to face the wrath of my friends if I take you. Like I said, guys can’t be trusted. That didn’t stop it from hurting.

Ok. That’s all right. Thanks anyways. I totally faked it off better than I had ever been able to. My heart was breaking and I knew tears would be coming soon. Thankfully, I was able to hang up the phone and make it to my bedroom before the first one dropped.

Nellie, I found the perfect jewelry to match your dress...

Mom, shit. I had to face her and tell her that she had just spent money on a dress that would never get used. I was angry, upset, and frustrated. I really should have remembered to lock my door.

Mom, I’m not going. Travis can’t go. She looked at me with pity and I knew she knew the reason behind him canceling. Then came the warrior. My mom changed before my eyes again and hit me with a plan.

Get up. You are not going to sit here and cry. It’s that time again, pull em’ up. I knew the motto was coming before she even said it. What I didn’t expect were her next words. I have a date for you.

"What are you talking about, Mom? Travis just canceled and I just told you about it. How do you have a date for