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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.





Join the Discussion

This article has 20 comments. Post your own now!

Katsview This work has been published in the Teen Ink monthly print magazine. said...
Feb. 20, 2012 at 12:21 pm
I'm so sorry; my sister, though not from epilepsy, has had several big seizures too, and it's very horrifying. You're a really good writer, and Great job!
 
Laiya94 said...
Apr. 18, 2011 at 11:28 am
wow. this is an amazing peice. you are a very strong person and i really admire you for having the strengh to overcome this battle. kudos to you!
 
renthead101 said...
Apr. 6, 2010 at 12:26 pm
i had epilepsy as a child and had a few seizures a while ago. this is an inspiring peice...
 
yourbabebritt92 said...
Nov. 9, 2009 at 7:08 pm
I'm so glad you posted something about this. I was started to feel so alone when I started having the seizures. Thank You so much!
 
CaseyLeigh This work has been published in the Teen Ink monthly print magazine. said...
Nov. 8, 2009 at 4:34 pm
This piece is so inspiring!
 
lynn horn said...
Oct. 31, 2009 at 12:43 pm
Jessica! You are in my prayers!
It will be my pleasure to read your article/letter to students I teach.
Good luck to you! Lynn Horn
 
C.Latimer said...
Oct. 30, 2009 at 5:57 pm
I hope things are going to keep getting better for you. Keep sharing your story, and helping the cause. You're a brave and great person, keep it up!
 
lynn horn said...
Oct. 30, 2009 at 10:36 am
I am a health educator and RN w/ the Epilepsy foundation. I was so inspired and impressed by your article; and would love to read it to my middle school and high school classes when I teach about epilepsy. Did the surgery help w/ the seizures? Good Luck! Lynn Horn
 
neverstopfighting replied...
Oct. 30, 2009 at 1:47 pm
I would love for you to read it to them. I want to speak to any schools that will allow me. Awareness needs to be made, people need to understand this so that the ones who have it aren't afraid. They need to know they are not alone.
The surgery ended up not helping at all, but I am not giving up. Something will happen for me.
Thanks for reading!
 
JessicaCollins replied...
Oct. 30, 2009 at 2:06 pm
By the way, "neverstopfight" was me. I'm sorry, I'm new to this and I'm starting to figure this out.
 
Lovestolaugh98 said...
Oct. 29, 2009 at 11:27 pm
Jessica,
You are the best friend anyone could ever have. I love you so much. Im glad that your doing better and I know that in the end you will keep fighting and everything will end up right for you.
Reading this made me realize how important you are to me.
Im glad your doing better and everything is coming back. REMEMBER I'm here for you no matter what
 
JessicaCollins replied...
Oct. 30, 2009 at 2:02 pm
I am so sorry, but who is this?
 
lovestolaugh98 replied...
Nov. 4, 2009 at 5:04 pm
BUBBLES!!!!!!
renee
 
loveofyourlife replied...
Nov. 10, 2009 at 10:56 pm
renee you are awesome, jessica told me you wrote this! haha
and jessica i love you so much! one year and one day! =)
 
Benkap said...
Oct. 29, 2009 at 10:28 pm
Jessica,
Very moving story. You might want to consider contacting The Anita Kaufmann Foundation (www.akfus.org) which is sponsoring Purple Day, a day dedicated to expressing support of and solidarity with people who have epilepsy. I am a Board member of AKF. Hope we hear from you.
 
JessicaCollins replied...
Oct. 30, 2009 at 2:05 pm
I actually know Michelle. I went to the fashion show in New York with her.
If I can do anything, please let me know.
I would love to be a representative and speak to people. Tell my story so they will tell theirs.
I will do anything to help out.
Awareness needs to be made
 
JKeener said...
Oct. 29, 2009 at 9:45 pm
Jessica,
You are a courageous young woman. I can't imagine what you've experienced but I'm humbled and grateful that you have chosen to share your story with the world.
I'm glad to hear that your body is re-learning and making progress. Blessings to you.
 
JessicaCollins replied...
Oct. 30, 2009 at 2:07 pm
Thank you so much.
 
MissyE said...
Oct. 29, 2009 at 7:47 pm
Such an amazing story! You are an inspiration. Thank you for sharing your experience. Makes me not want to take a single day for granted.
 
neverstopfighting replied...
Oct. 30, 2009 at 1:50 pm
Thank you so much for reading my story. I hope I can inspire others to tell theirs.
 
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