Black Out: My Epileptic Journey
October 3, 2013
I feel like I have told this story a thousand times. However, to me, it never gets old. It was my freshman year of college and I was sitting in statistics class at Appalachian State University, when my entire life changed. My memory of that day begins with me being rolled out of Walker Hall on a stretcher. I didn’t remember going to statistics class. I didn’t remember that I had borrowed my roommate’s shirt as I ran out of our dorm room. I didn’t remember that I had been late to class.
All I could remember were the events of the night before. I had been out with friends, not far from where Walker Hall was located. My immediate thoughts were that I had wondered away from my friends, drunk and passed out on campus. I so seriously thought this that I even asked the EMT if I was going to get a drinking ticket. He responded with laughter because he knew I was not drunk. That would have been nice for him to share with me. I felt like I was in a twilight zone. I had no idea what was going on around me. All I knew is that those medical professionals caring for me looked concerned and that made me concerned. During my time in the emergency room, my memory slowly came back. I remembered borrowing Jenna’s shirt. I remembered going home the night before. I remembered going to class.
Over the next few days, doctors tried to determine what exactly happened to me. See, I had never had a seizure before and no one could figure out that is what happened. Anyone ever have a spinal tap? I don’t recommend it. I also had countless other tests: MRIs, CT scans, EEGs and blood draws. The doctors concluded that I had had a tonic-clonic seizure and they also found a brain tumor. A tonic-clonic seizure is the stereotypical seizure, the one everyone thinks of when they hear the word “seizure.” It’s the fall-out, unconscious convulsions. Also, there was no way to know how long that tumor had been there. After all the tests and evaluations and being in the hospital for a week, we proceeded with a “wait and see” form of treatment. I was thrilled. I just wanted it all to be over. That was the easiest and best way for it to be over: do nothing.
My body had different plans. I had another seizure just a few months later during the fall of my sophomore year. At this point the doctor thought medication and making plans to get rid of the tumor were a good idea. I didn’t change my lifestyle much based on any of this news.
Shortly after my brain surgery we made an attempt to take me off of medication, I had a seizure. So, back on meds I went. I have been on anti-epileptic meds (AEDs) ever since.
My early 20s were challenging, not only for me, but also for those close to me. I was a walking nightmare. I lived my life as many typical college kids do: I worked hard and partied harder. As my 20s went on, it seemed that I hardly worked and partied always. I lived from one party to the next. I made fast friends everywhere I went. I was having the time of my life. I took my seizure meds, but did little else to be healthy. I slept minimally. My diet was complete crap. I didn’t even know how to spell exercise. I was looking through old college photos the other day and they made me sad. It was one drunken photo to next. Surely drinking couldn’t have been all I did?
Somehow, through all the parties, I noticed how others around me were graduating college and starting jobs. Having goals was something I wanted and needed. I had goals, but I didn’t break my back to achieve them. I attended school part-time and I worked full-time. I figured if I graduated sometime that decade, I would be fine. It took me 10 years to graduate college, with my undergraduate degree.
My early 20s remain blurry. I relive those memories in search of something, but not much comes up other than an empty bottle and a hangover.
Don’t get me wrong, I also remember having more fun than I could ever have imagined during those years. However, as I get older and reminisce, I realize the life I was living was one life trying to hide another. Being the life of the party allowed me not to deal with my epilepsy. It allowed me to move from one awesome night to another without thinking about my illness. If I was always “happy,” epilepsy and its problems couldn’t get in my way.
I am not ashamed or afraid to admit how my life looked shortly after being diagnosed with epilepsy. Epilepsy was something I was not expecting. It was something I, at the time, was unwilling to deal with. It took me years to cope. It took me years to learn how to care for myself the way that I should. It took me years to learn that I have epilepsy, but that does not define me. It took me years to learn how to fight epilepsy. It has taken years for me to speak out about it. Today, I will talk your ear off about my journey, if you’d let me.
My acceptance point was around my 25th birthday. An amazing man walked into my life and has never walked out (my amazing husband). At that point in my life I was living with my brother, of whom I had (and still have) an amazing relationship with. It truly has been through the love and compassion of my husband and my brother that I have been able to open my eyes to the world around me. I have become the person I want to be because of their endless support. Of course my parents have always been here too, but as an early 20-something year old, following your parents’ advice is a tough pill to swallow. And it would take me this entire essay to thank everyone else who has been there for me along the way.
Now, 13 years post-diagnosis, I average one tonic-clonic seizure every 3 years. I know this to be very amazing in the world of epilepsy. For me, however, I would like that number to be zero. I still battle with epilepsy every day. It impacts major life decisions: driving, employment and having children. Some days I feel amazing, like I could never possibly have another seizure. Some days I feel really shitty. My seizure triggers are stress, alcohol and sleep deprivation, in no particular order. However, they all work together. It is rare that I have a seizure without the three of them working together. So some days I may be exhausted, stressed or worried. Some days I have migraines. Any day I don’t feel well is worrisome. If there are multiple days that I don’t feel well, that is a huge problem for me.
My health and wellness are so extremely important to me, that now, I almost obsess over it. Almost. I eat a clean diet (vegetables, fruits, meats, etc). I rarely eat processed foods and harass those around me who do. Exercise is a vital part of my day. The health benefits of regular exercise are endless. I enjoy it so much that when I don’t spend time each day moving, I feel “blah.” Sleep is my religion. We meet every night for at least eight hours, preferably nine. I am a very social being. Social wellness is just as important as the rest. I thrive on spending quality time with friends and family. It makes my heart sing.
My complete wellness has become so important to me now. It has only taken 13 years to learn why. Being healthy, in all aspects of my life, is what helps to keep me seizure free.
I will always have epilepsy. I will most definitely have another seizure, or two or three. It is not a matter of if; it is a matter of when, as told to me by my doctor. I can only do so much to delay the inevitable. I have accepted all of that. Finally.
However, if I could go the rest of my days without another seizure, I think I could accept that too.
About the Author
My husband and I live in North Carolina with our four fur babies (2 cats and 2 dogs). We love to travel and are huge hockey fans (go Hurricanes!). By trade I am a licensed and certified Recreational Therapist. I have over 10 years experience working Recreation and with children (preschool-elementary). However, my true passions are creating things. I enjoy creating art projects and homemaking cooking. I love to write about things that excite me, concern me and that bring me passion. I contribute to Yahoo! as well as to my two personal blogs.
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