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Making it through
I was falling—not only through the bed, but also through the floor. I was falling fast and hard, waiting to land on something. Anything. Please, God, make it stop, I plead. But I knew it wasn’t going to happen. I just had to wait until I was gone—until I was unconscious and I didn’t have to feel the pain and fear anymore.
That seemed to be the routine. The plea to God every time I realized I was having another seizure. The aura 20 seconds before it began, the turning of my body, the fear I saw in my mother’s eyes before I lost my sight, and then the sound of people telling me I was going to be okay just before I fell completely unconscious. Yet no matter who told me I was okay or however many times they said it, it never took away the fear.
I was diagnosed with epilepsy when I was five years old, caused by scar tissue on the left side of my brain after a difficult birth. It started with complex-partial seizures, where my right eye would twitch and I was incoherent. But after I was put on medication, the seizures stopped and I felt normal again.
Unfortunately, as my age increased, so did my seizures. Once I got to high school, my stress levels rose and I started getting less sleep—a horrible combination for anybody, but especially for someone with epilepsy. By the end of my freshman year, I began experiencing breakthrough seizures. Basically, baby seizures where the right side of my body would become numb for a couple of minutes. When those occurred, no one would notice, but it terrified me because that was the feeling I’d have before a tonic-clonic or convulsive seizure.
In the average day I would have about two to three breakthrough seizures. My doctors switched and increased my medications, but nothing worked. That’s when the option of surgery was thrown on the table. It took a while for my parents to agree, but I felt like it was the only option left for me to lead somewhat of a normal life. Even though I was horrified, I tried not to show it. In truth, I had never felt so alone.
My first surgery was basically to see if I was a candidate for brain surgery. The doctors attached electrodes to my brain to give them a clearer picture of the scar tissue causing my seizures, and most importantly, to see if it would be safe to remove it. After five days of tests in the hospital, I was cleared for surgery.
November 9th, 2008. The day before my surgery. Many doctors and nurses came to talk to me that day, but the one conversation I will never forget is when the nurse asked me if I was willing to let them wake me up during the surgery. I told her, and my parents who were right next to me, that I was up for it and I would be fine—that I understood they had to since they would be operating close to the nerves that control my senses and ability to move. Inside, I was horrified. I was scared enough knowing that in just a few hours my skull was going to be hinged open and doctors would be taking out part of my brain… And now I had to be awake for it!
I could barely sleep that night. I prayed that I would not die on the table; that I was worthy enough to live through it. When I woke up, there seemed to be no time to waste. Nurses were everywhere, doing whatever they could to get me down to surgery ASAP. They gave me the anesthesia and wheeled me into the surgical room. I looked up and saw a bunch of machines and people in scrubs all around me. I felt like I was in an episode of Grey’s Anatomy. It seemed so surreal. Then I was out.
My doctors told me I wouldn’t feel a thing when they woke me up mid-surgery, but when the time came, I felt the pain. I was screaming and crying and they had to calm me down before they could continue. The doctors asked me to move my arm, count backwards, and they touched my arm to see if I could feel it. I hadn’t expected that part to scare me as much as it did.
The doctors told me to expect weakness in the right side of my body, but when I finally woke up from the surgery, it was so much more than weakness. I was uncomfortable. Not only did I have excruciating pain in my head, but I was laying on something. It felt like a log was in my bed and I cried for someone to move it. When they moved my sheet, I looked down and realized it was my leg. I tried to move it, but nothing happened. I quickly realized I couldn’t feel or move the entire right side of my body. It was like my brain had forgotten half of me. I lay in bed, horrified, and even though I knew my parents tried their hardest to hide it, I knew they were too. It was written all over their faces.
That night, I lay in the ICU asking God to take my life so the pain would go away. I didn’t want to go through the struggles I knew I would soon face.
Even with all my pleading, God spared me that night and my surgeon came in the morning and talked with us. While he hadn’t expected my loss of functioning to be this severe, he told me not to worry—I would be able to walk, and there was a good chance I would get feeling back.
I was moved out of the ICU and back into my somewhat quiet hospital room. Being confined to my bed drove me crazy. All I wanted to do was go outside and run through the grass—to feel the warmth of the sun on my face. What a long shot that was! I couldn’t do anything for myself. My parents had to feed me and change my clothes whenever I gained enough strength to sit up.
All I wanted to do was give up and stop fighting. But somehow I found the strength to turn my fear and anger into determination. Three days after the surgery I was able to stand and walk a bit on my own. I still had no feeling, but somehow I found a way to control my leg. I was able to go home and that’s all I wanted.
It has been almost a year since my surgery and I have re-learned how to walk and running is slowly coming back. I am also learning to write with my left hand. I have gone through intense physical and occupational therapy, but without regaining much feeling, except for extreme pain.
I honestly have no idea why this happened to me. I used to stay awake all night just to “fight” with God. I felt like I had lost everything that made me, me. I can barely run, or play the sports that I love, or even play my guitar. I’ve even broken down after dropping something I tried to hold in my right hand. I lost myself.
But gradually, the anger has gone away and I am finding myself again. The “why” question has not gone away, but I know there must be a reason. Maybe it was to write this—to tell my story so that other people will tell theirs… or just to help them not feel so alone. No one deserves to, yet I have for most of my life. But I won’t let myself feel that way anymore, and I am telling everyone out there with epilepsy that they shouldn’t either. Epilepsy affects millions of people around the world, but most of us hide it the best we can because we are ashamed or just afraid of what others will think. I don’t care anymore, and neither should anyone else. My epilepsy and my surgery are a part of me, but I will not let them define who I am.