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Epilepsy Blog Relay™: Staying strong no matter what

jhanleyThis post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

Joey’s Story

Growing up I was a pretty normal kid with no signs of epilepsy. I developed some ticks/twitches at age 5 and severe anxiety but that was about it. It wasn’t until my freshman year when I was 15 that I had my first seizure on my way to an old girlfriends house in the passenger seat of a car. Actually, that was the first one that we knew instantaneously it was a seizure. My FIRST seizure was Christmas night 2012. I woke up at around 1:30. I felt sick. Feeling as if I was going to get ill I went to the bathroom and lied on the floor moaning in pain. I then proceeded to get up and sit down on the toilet with my head in my hands trying to just collect myself. I don’t remember exactly how long this went on until I passed out. My epilepsy had just begun.
I went face first into the glass doors of the shower. I smashed it into pieces leaving shards of that glass door in my face and at the same time the toilet bowl was kicked out from its place as I fell. I finally came to wearing nothing but boxers (took everything off thinking I would puke) and covered in a literal pool of my own blood. I thought it was just from my nose until I reached up to touch my face and felt blood run down from there as well. Running my hands up and down I felt small shards of glass stuck in parts of my face and one large piece stuff right under my cheek. Pulling it out was just as painful. I stood up looking around, crying, screaming, in tears and terrified.
The wall was a murder scene. I looked at the mirror and what I saw was horrifying. I walked toward the mirror but the next thing I saw was the floor inches from my face again and had another seizure. The rest of the story is just too explicit to tell and not my whole story. I had a few more seizures that week until being seizure-free for a year with medication.
My next seizure after that, ironic enough, was coming back from the hospital. I had stopped taking my medication because I was so healthy. It was a bad one. For 30 minutes I was going in and out of it. That one took quite the toll on my body. For a week I was very weak and sick. But that wouldn’t be the first time seizures like that would happen.
I’m a baseball player so me having so many seizures (over 40-50 I stopped counting) and being put on all sorts of different medication really impacts performance as well. Baseball is my second love in life after family. So, I don’t know if you could understand how I felt this summer but you can know the depression I fell into when I had 11 seizures and lost 30 lbs. going from 180 to 150. Not to even mention impacting performance, I had to end my season. To someone who relies on baseball to free their mind, this was so devastating! Falling into this state of depression I stopped cutting my hair and shaving. When I say I stopped shaving and cutting my hair I had a big beard and scraggly curly monkey hair. I stopped taking care of myself. Stopped eating. Stopped caring. I would wake up each day thinking there’s no meaning and saying out loud “&$%* this” to myself. At one point I just straight up hated myself. I was giving up.

Staying strong

There are SO many other things that I wish I could tell you but it would take too many words, too many painful memories, and too many tears. I’ve had seizures that could have killed me or paralyzed me badly. I’ve fallen from over 5 ft. high in the air and bashed my head so hard I probably had concussions. Yet I would will play baseball even the day after I had these. I had to deal with becoming ill between innings after I would pitch that inning.
Coming back from this summer was so difficult. I just 2 weeks ago gained all my weight back and earlier in the year I threw my hardest averaging 90 mph and touching 91 mph. I actually wanted to just quit but my dad gave me the gift of believing in me. I just needed someone to believe and he did and for that I’ll love you forever dad! And mom, I’ll love you forever for doing everything you’ve done for me. You’re a saint. Ty, my little brother, I’ll love you forever for your sacrifice and love. Olivia, my older sister, I still insist I’m your older brother but I’ll love you forever for your support. If you’re reading this I hope you realize how much I love y’all! Thank you!
To anyone struggling as I have and do, take this one day at a time. This disease is no joke and nothing small at all. We are not defined by this. Epilepsy is not us, we just embrace it as a part of us for we can’t deny we live with it everyday. But, never shall it absorb us.

My advice

  • Fight it each day with aggression
  • Take it a day at a time
  • Love yourself
  • You’re not alone
  • Someone out there cares and had your back
  • Epilepsy makes us stronger

Lastly, believe in your dreams no matter how cliché it may sound. Love yourself and everyone. Thank you for listening to my story and I’d love to hear yours as well. Love to everyone who deals with this! Stay purple strong! I’m Joey Hanley and I live with epilepsy. Thank you!

Joey Hanley is a Senior right-handed pitcher for the Prairie Ridge High School Baseball Team in Crystal Lake, IL. He is also an ambassador for the Epilepsy Foundation’s nationwide program, Athletes VS Epilepsy.

NEXT UP: Be sure to check out the next post tomorrow at LivingWellWithEpilepsy.com for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com/epilepsy-blog-relay.

Be sure to check out the Epilepsy Blog Relay Thunderclap to raise epilepsy awareness. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.

9 Responses

  1. Janet
    | Reply

    Thank you for sharing your story! Your words help me understand the struggles my son goes through. Bless you and your family for your love and courage.

    • Joey Hanley
      | Reply

      Tell your son he’s not alone we’re all in this together and god’s got us so we’re going to be more than alright! Thanks!

  2. Leila
    | Reply

    This was wonderful! It can be so hard to stay strong during the struggles of Epilepsy but I’m so thankful you did!
    I also went through periods of extreme weight loss/gain. It took such a toll on my physical and mental health. It’s a side effect that is often unmentioned. Thank goodness you had supportive family to help you succeed.
    Keep going! You’ll do great things, even with Epilepsy in your life.

    • Joey Hanley
      | Reply

      So hard. But we’re doing it together one step at a time. Love everyone. Everyday in some of our cases isn’t promised so it’s best we just fight fight fight and love love love so each day we live to our best!

  3. Emily Sian Donoghue
    | Reply

    Amazing writing, well done! I understand your struggles, and I love the way you have put it all into writing, it’s wonderful. You are right in saying that Epilepsy makes us stronger!

    • Joey Hanley
      | Reply

      Thank you very much!! Love to all! Thanks for listening!

  4. Bryce Rae
    | Reply

    Sounds like you have hard some times when Epilepsy has really taken it’s toll physically. I really like your advice , such as staying positive. I’m glad you speak of your family. Sounds like you have good relationships. People should love us with Epilepsy, no matter what.

    • Joey Hanley
      | Reply

      I agree. Thank you for listening to my story! Everyone has their own history I suppose. Ours is just a little tougher than others.

  5. Lance Scott
    | Reply

    I just found out about my epilepsy three years ago at the age of 27! Since then I have probably had about 30 gran mal seizures. I love your positive attitude because not everyone understands how hard this can be to deal with. Not only does it take a toll on you physically and mentally but it is emotionally draining trying to understand why! The depression can really get to you and having strong support really helps. I’m doing what you talk about and going one day at a time! Thanks for sharing your story.

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