Epilepsy: My Story

You are imprisoned. Your captors are known for their cruelty. You are in an unfamiliar land, far from anyone who will help you. Worse yet, your family and best friends are imprisoned, separated from you. Finally, a guard tauntingly tells you a thing you’ve been dreading more than your own fate. Tomorrow at eight A.M., fourteen hours from now, your loved ones will be tortured and killed in front of you. The floor drops out from beneath you, then rises up, spinning, catapulting you into a hateful whirlpool of nausea. You are freezing, but you are sweating. You have never felt so completely abandoned, even by God. Satan has never felt so close. It feels as if someone takes every memory and thought you’ve ever had out of your head, dumps them on the floor, then throws them back into your head in a jumbled mess. Nothing is familiar, and yet you have been through this before. After a few hours, you are physically exhausted. Finally, you accept that there is absolutely nothing more you can do to escape or help your loved ones. Cognition is like a butterfly. It whirls and flits through your mind, but there is no way to hold onto it. Fear and heartsickness are living beings with you in that cell. The level of despair is so heavy that it forces you down to the ground, where you can do nothing but wait for it to be over.
This dramatization is the sense of the helplessness and despair I feel during auras and seizures. For a long time, I believed I was having panic attacks, and there was always an explanation – no sleep, stress, a menstrual period, not eating properly, getting overheated. I felt embarrassed that someone with a Psychology degree, a self-proclaimed optimist, should experience this kind of thing, and I believed I could handle it on my own. I tried to do just that, for years. I hid it from family and friends to the best of my abilities, blamed it on outside circumstances, and suffered in silence.
In 2012, my birthday weekend dawned warm and sunny. The scents of honeysuckle and spring flowers dominated everything. My plans included the purchase of a new IPhone, time spent with family, and a trip to the Cheesecake Factory.
On the day before my birthday, my mother drove me to the store to get the much-anticipated gift. I was in high spirits and feeling fine. I was standing at the counter, finishing up the purchase when the world began to spin. I felt nauseous and dizzy. I was cold, but I started to sweat.
I asked if there was a chair nearby, and then I was waking up, on the floor. A man’s unfamiliar voice asked me if I knew the date. In a haze, I wondered why he wanted to ask me such difficult questions. I was lifted, carried, and I apologized to whoever was carrying me, saying I was sorry I was so heavy. They said something kind, but again I was lost to the haze.
Memories fade in and out – a CT scan, someone telling me I had a seizure which had caused a fractured skull and intracranial bleeding, asking my mother to call my friend Desiree, feeling very cold, obsessing over who would feed my cat. The day flowed along, until someone made the decision that I’d be spending my birthday weekend in the ICU of a hospital specializing in neurology.
I was wheeled out to an ambulance, with an oxygen mask covering my nose, and I remember wondering in a dreamy unconcerned way if it would be the last time I would smell the night flowers of springtime. The oxygen kept me from smelling them anyway, but that didn’t bother me. At the new hospital, another CT scan followed, and I was amazed that this was the first hospital that didn’t smell like alcohol and illness. It took me two days to realize that my sense of smell was completely gone, and my sense of taste was diminished by 90% or more. The next seven or eight months, I experienced nausea, dizziness that never went away, and brain fog. I came to terms with the fact that my loss of smell and taste was permanent. I also learned just how close I came to losing everything. While visiting my chiropractor and discussing my injury, he placed a finger on my head and said, “You hit here.” He placed a second finger on my head, so that both fingers were almost touching, “If you had hit here, we wouldn’t be having this conversation today.”
Even with the loss of some perceptual senses, I knew I was lucky. I could speak. I could write. I could walk. I could think. I could recognize my loved ones, and I still possessed the ability to tell them what they meant to me.
I felt shocked, unmoored, and ultimately relieved when my neurologist told me I had temporal lobe epilepsy. An EEG confirmed the diagnosis. For years, I incorrectly self-diagnosed my experiences as panic attacks. These temporal lobe seizures are triggered by stress, sleep depravation, low blood sugar, and premature birth.
Once I received the diagnosis of temporal lobe epilepsy, I believed it would be a simple thing to manage. After all, I was blind, and that was easy to live with most of the time. Blindness might be
inconvenient, but it never bothered me that much. So, epilepsy? . Big deal. . I’ll take a pill, avoid seizures, and keep going.
I had no idea about the side effects of medications. I had not experienced post-seizure depression. I had not felt the anxiety that causes you to want to hide from the world for fear that you will have a seizure in public. I had not lived with the uncertainty about the future caused by epilepsy. I had not faced the negative attitudes of others concerning this disorder.
Needless to say, I had a LOT to learn!
I am older and wiser now, and I have knowingly lived with epilepsy for three years.
A lot of times, I say, “It was so much easier when I was just blind.” But on Purple Day, the day that symbolizes epilepsy awareness, I can tell you a couple of things.
I walked a half marathon to raise money for charity before I knew I had epilepsy . and I will do it again!
I planned to live in a city that would allow me greater independence before I knew I had epilepsy, . and I will make it happen!
I planned to make money as a writer before I knew I had epilepsy, . and it’s happening now!
I hoped to find someone to love before I knew I had epilepsy, . and I haven’t lost that hope.
I knew I was going to win at this life before I knew I had epilepsy . and I . AM STILL . GOING . TO WIN!
I am blind. I have temporal lobe epilepsy. I have a severe sleep disorder which aggravates seizures. I have no sense of smell or taste, because of the fractured skull. In short, epilepsy is all up in my face, every day of my life.
But I am still here, still succeeding though the victories may not come so easily as they once did.
I am not giving up. I am getting stronger.
Every day, I am getting stronger.
That is how I am living with temporal lobe epilepsy.

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Author: Jena

Hi there. Thanks for stopping by. I am a small-town Southern writer, book hoarder, technology enthusiast, unashamed cat lady, and huge fan of the Outlander series. I have a degree in Psychology from the University of Texas at Tyler. I love nothing more than to paint pictures with words, and to make people happy, and if I can do both at the same time, all the better. Gratitude, simple joys, and optimism are the cornerstones of my life philosophy. I am totally blind, and I have non 24 sleep disorder, and temporal lobe epilepsy. These health issues make for some interesting times, but adversity has taught me wisdom I never would have learned otherwise. I hope you will enjoy my writing, and I thank you for taking the time to read it.

10 thoughts on “Epilepsy: My Story”

  1. Hey Jena:

    I continue to be impressed more and more with each new entry of yours that I read. You are a very talented writer and you have very vivid ways of describing things. Thank you for sharing this glimpse into your world and experiences with all of us. It is very encouraging and uplifting to see your positivity and determination. I am glad that we have been able to cross paths and can’t wait to read more in the future.

    Liked by 1 person

  2. Thank you for explaining your situation so well, I learned many new things. I wish you luck in the future, with your sense of determination and obvious talent, you will go far.

    Liked by 2 people

  3. Jena I have been diagnosed with Epilepsy since I was in 3rd grade. I have never felt ashamed or let it limit me. Did not know if I ever told you that. Lucky for me, my medication keeps it under control.

    Liked by 1 person

  4. hiya – your write beautifully. I have epilepsy and the neurologists are still trying to investigate it. I have had seizures but mostly I experience brain fog to a devastating degree. I realise now that mostly I don’t smell that much or taste that much or even recognize what the weather is like. I was wondering if you have any positive experiences with meds or anything else and also apart from Eegs and CTs if you had had any other tests

    Liked by 1 person

    1. Thank you so much for the compliment to my writing!
      I haven’t had much luck with seizure medication. But you might ask your doctor about taking antidepressants, because I have had great luck with them. From what I understand, epilepsy is linked to greater incidents of depression. So I am thinking that an antidepressant might help you with your brain fog.
      The thing to remember is that everyone is completely different, so what works for me might not work for you, but the most important thing is just to keep communicating with your doctors, and keep working to straighten things out.
      I haven’t had any other tests besides an EEG, so I really can’t comment on any of the others.

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      1. So far the neurologist s have told me to see the psychs and the psychiatrist has told me to see the neurologist. The neuropsychiatrist told me to see a specialist neuropsychiatrist but I will keep trying. As you say everyone is different

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