My first ever blog post — 2015
The struggle that brought me to find…me.
It was Christmas Eve. I was driving around the block with my two sweet boys in the back seat. They giggled and looked out the window, they had no idea why we were driving around the house over and over. I had no idea why I was so confused. I couldn’t get this strange fog out of my mind. This heavy weight was resting on my brain, holding me hostage from my memories and thoughts. My oldest son asked where we were going. Our house was right there. I could see it but I didn’t go home, I didn’t know how. I circled the block again and again. “What just happened? What do I do?”, I thought. My gut feeling was overwhelming fear. Am I okay? What do I say? What do I do?
I finally pulled into the driveway after what felt was 200 times around the block. I got my boys into the empty house and sat them down with a snack. I needed someone to talk to. I needed someone to tell me I was okay. I called my husband, no answer. I called my mother, no answer. I called my dad. Hearing his voice say “hello” made me burst into tears. I cried “I don’t know what just happened to me. I’m confused. I feel sick. My brain has let me down. What do I do?” I tried so hard to put what just happened to me into words. It’s something that feels so impossible to explain. I just had my first seizure and had no idea. This is the day my life changed forever.
I was visiting a neighbor a block away exchanging Christmas gifts. We talked about Christmas excitement…and that’s all I can remember. I remember her daughter saying something that gave me an overwhelming “déjà vu” feeling. It hit me like a ton of bricks. It all felt so familiar, every word, every feeling. It lasted about 3 minutes. I was left with a cloud of amnesia that followed me all the way home. Today, I don’t remember what it was she said to trigger that feeling. I remember being faint, scared, nervous, anxious. I felt as if I was going to get sick. I felt trapped in an overwhelming funk of feelings. You know in the movies where the leading lady finds out that her crush fell in love while on vacation and they’re now planning a wedding? She stares off into the distance and the characters around her talk but it’s muffled? That’s what happens to me during and after a seizure. I can’t remember a word I said. I can’t remember the words anyone else said. In the moment I couldn’t comprehend what she was saying. I just remember nodding my head. My body was functioning just fine, but my brain wasn’t. She helped me to my car with all of the wonderful Christmas gifts and treats. She hugged and kissed the boys as I loaded them up in the car. I drove towards my house…only seven or so houses away. What felt like 15 minutes later, after continued circling of the block, I made it home. I stopped at each stop sign. I drove my car just fine. Or did I? I. Can’t. Remember. I. Can’t. Remember. I. Can’t. Remember. Today these words come off of my tongue more than they have ever before in my life.
After an ER visit claiming I was only “tired because I have 2 boys under 3” I felt lost. I knew this was deeper. Deep down I knew something was horribly wrong. I knew my mind was slipping out of my grip, out of my control. I went on with my life having more and more unknown seizures. I would feel an overwhelming “déjà vu” with nausea and almost peeing my pants. I would then have a forceful amnesia that would leave me confused and lost for about 15 minutes or so. The confused lost feeling would then lift off of my brain like a pressure releasing.
Fast forward about a week later, I had made a Facebook post explaining my symptoms. A mutual Facebook friend, a nurse who works for a local neurologist, reached out to me. She knew exactly what I was going through. She seen it all too well. I was having partial seizures. She got me into her neurologist right away. I have Temporal Lobe Epilepsy with Complex Partial Seizures. These seizures start in one side of the brain and stop before completely going all the way around. I had no idea anyone could have seizures without the most well known Grand-Mal symptoms of convulsions. After a clean MRI and EEG, I don’t have answers as to why. I don’t know how this happened to me. I think that is the most uneasy part of my diagnosis.
I am now about 6 months into my Epilepsy diagnosis. I am almost 3 months seizure free. I don’t know what my life would be like if it wasn’t for the nurse reaching out to me on Facebook. She helped me tremendously. I could still be lost looking for answers…debilitated by these horrific seizures. Now I am able to accept the diagnosis and begin looking for who I was before my Epilepsy. I haven’t been behind a steering wheel for almost 6 months. I take daily medication to control my seizures. I have only had a few seizures since my diagnosis. I am not the woman I was before. I have a horrible memory. I always forget things. I don’t have the same interest in things I once enjoyed. I have good days and some not so good. Because of my medication’s symptoms I sometimes get extremely tired easily, just holding my boys can cause my arms to become weak, just one flight of stairs can force me to stop and take a break. I won’t let this change me or break me down. I am stronger. I push through each day with a smile on my face. I work hard to take each day as is it. I continue on my way to become HER again…to remember my life before Epilepsy. This is my journey.
Dear Epilepsy, you’re going down.