Share Your Seizure Story: Luke

Hello everyone. My name is Luke. I am 14 years old. To other people, I may seem like a totally normal kid. I go to school, I have friends, etc. In fact, the only way people don’t consider me ordinary is by the fact that I don’t like video games or strawberries. Trust me, those are big topics of conversation when I’m talking to people. But ordinary is just a label, a useless one in fact, because no one is ordinary. Ordinary just doesn’t apply to anyone. I’m no exception.

I have had epilepsy since I was 10. It has been unpredictable, with seizures occurring when I least expect it, and not occurring when you expect them to. I have been lucky to have only had 9 seizures these past 4 years, but the danger of my epilepsy comes from not how many seizures I’ve had, but the force each one brings. My whole story started when we least expected it to ever occur, 4 years ago at an airport hotel the night before Thanksgiving. My grandma was leaving for an early morning flight Thanksgiving morning, and since my dad was on his EMT clinicals, my mom decided we should all go stay in a hotel by the airport. My brother, my mom, my grandma, and me. I was ecstatic! We rarely stayed in hotels, and hotels were pretty much my favorite thing ever at the time. It was not an unusual night for us. We brushed teeth, got tucked in, and that’s all. Everyone was asleep when I was still awake. I was unusually restless, but I fell asleep eventually. I guess I should have taken all this as a warning.

The next thing I know, I wake up and I’m not in bed. The room is filled with many more people than I went to bed with. I look around and see I’m sitting on a stretcher in the middle of the floor surrounded by paramedics. I didn’t care about this though. I just needed the bathroom. Little to my knowledge, I had been awake for a while and had been to the bathroom several times already. Finally my mom made me lay down on the stretcher and said to wait until we got to the hospital. Now I knew something was up. I asked her what happened and she simply replied, “You had a seizure.” Suddenly, a bell went off in my discombobulated brain. I had heard this word many times before. All that I could be sure of was that something bad had happened.

A while later, at the hospital, when my brain finally had the capacity to understand, I was told I had a tonic-clonic seizure around midnight. It had only lasted a minute, so by the time my frightened mother had found the phone and called 911, it was over. That night was just the beginning of a major series of events and the kickoff to the hardest year of my life.

Ever since I was a few hours old, I’ve been fighting the forces of invisible evil. If I factor in the 2 times that I have had status epilepticus seizures, which are dangerous, life-threatening seizures, I would lose count of how many times I’ve come close to death. But each and every time, I’ve just pushed death away, determined to keep on, no matter how hard it is to do so. And I have certainly felt the consequences. It’s the stress and the fear of knowing that at any minute, I could fall down and start convulsing. And now that I am in a high-pressure school, it just makes it worse. I was so unfamiliar with such a large school that I had an aura on the very first day. I’ve had a panic attack in the middle of the hallway too. But no matter how stressful things get, no matter how many problems you must face, your challenges are not what define you. It’s how you handle them. And if you can handle things well, you may even find that some good things come out of all the chaos. That is an entirely different story to tell another time, so I will leave it at this. I encourage you to share your seizure story and make your voice heard.

16 thoughts on “Share Your Seizure Story: Luke

  1. Lisa says:

    That was so well written Luke. I’ve never heard anyone describe it before. You are very smart to realize that it’s how you handle it that makes you a stronger wiser person. You will continue to do well in life. Thank you for sharing.

  2. Jennifer M. says:

    You inspire me, Luke. Thank you for sharing your powerful story.

  3. Kimberly Dorencz Cuervo says:

    Well said, Luke. Keep fighting the good fight!

  4. Lillian Wodynski says:

    Very powerful and to the point. Good luck Luke

  5. Mary H says:

    Luke, You are wise beyond your years. Thank you for sharing your gifts with all of us. I look forward to following your bright future and all it holds!

  6. Lauren Skerrett says:

    Luke, you know I was one of your biggest fans before reading this, but your words have blown me away. I have no doubt that you will be instrumental in changing the world. Thanks for being an inspiration to so many of us!

  7. Anne Murphy says:

    Thanks for sharing your story Luke!

  8. Lisa Maggiore says:

    Thank you, Luke, for this open and honest story. I appreciate how you shared what ordinary means to you and how you’re also making your voice heard so that others can understand and empathize with epilepsy. I’m going to have my 11 y.o & 14 y.o read this so they too, can read your amazing & not ordinary story!

  9. Nancy O'Fraley says:

    Thank you for your story Luke! Your writing ability at 14 years old, is exceptional!

    I remember in high school I had a friend, who I spent the night with, holding a tongue depressor, because her mom was going to be gone and she too, never knew when she would have a seizure. I have often wondered what it was like for someone, who is having the seizure. Being unsure what you meant by an aura, I looked up aura seizure and was surprised, as I have those, usually without much of the head pain a migraine brings after. It’s a helpless feeling to have my vision so distorted, with a flashing wiggly line breaking up my perception of sight, and my lack of being able to focus very well for a while. They went away for years but have returned since I’ve been in KY. So you have started me thinking more about this subject. Thank you again Luke… Merry Christmas to you and your family! May a deeper understanding ripple into 2018 bringing healing, full circle. Blessings, love and hugs! Nancy-O

  10. Claudia Ascencio says:

    Dear Luke,

    You are brave and wise beyond your years (and a wonderful writer). Thank you for sharing your story. I am humbled.

  11. Griselda says:

    Luke, you are wise beyond your years. You are wise, smart, optimistic and kind. You are an inspiration. Continue facing your challenges with your beautiful smile. God is with you.

  12. Leslie Chenoweth says:

    Thanks for sharing your story, Luke. You are a strong, brave young man with a bright future ahead of you.

  13. Nora says:

    Luke. I knew you were amazing before you were born. I watched you and your mom work so hard to get you earth-side. From your very beginning you have overcome so much. Thank you for speaking from your heart.

  14. John Meade says:

    Thank you for sharing your story Luke. You’re an inspiration to us all!

  15. Jen Durack says:

    Thank you Luke for having the courage to dig down and share your experiences with the world. You will bring comfort, inspiration and strength to others when you can put yourself out there with honesty and bravery like that.

  16. Tom Leyden says:

    Hi Luke- great story and I agree, nobody is just ordinarily. Thank you for sharing.

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