Never Give Up

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Ariel Yong Hydrocephalus Association Teens Take Charge MentorThere’s a whole laundry list of things I can’t do.

I can’t go scuba diving. I can’t play a wind instrument. I can’t go horseback riding. I can’t hang upside down for too long. I can’t play football. I can’t lift heavy things. I can’t do headers in soccer.

And for those of you with hydrocephalus, maybe you’ve heard these things, too. But I’m here to tell you that our lives are not defined by a list of “I can’ts.” It’s not always easy to see it this way (especially in the wake of a hydrocephalus diagnosis), and it took me a while to figure this out.

When I was younger, any time a classmate noticed my shunt protruding from my neck or the large scar on my stomach, my heart started beating one thousand miles a minute. My body temperature spiked and my palms got sweaty while I tried to think of an explanation. Oh, it’s just a vein. Appendicitis. I fell and cut myself. Basically, I’ll tell you whatever you want to hear and will believe, so we can stop discussing the main reason why I’m so different.

And for the few close friends I did share my big secret with, I didn’t go into details. I didn’t explain that I have hydrocephalus, an incurable neurological condition where I had surgery to have a tube put in to drain the excess fluid in my brain. I would simply describe it by reciting the list of “I can’ts” that I began this story with.

But here’s the thing. We’re really not that different. Looking back, I wish I wouldn’t have rattled off all those “I can’ts.” It was hard for me to accept my condition and still feel “normal.” But I’ve learned. And I’m still learning. And one place that helped me see myself as just a “normal” girl is sports.

Now, you might be thinking, “Sports are definitely on the ‘I can’t’ list!” I’d be lying if I said there isn’t a risk playing sports with hydrocephalus. Both my parents and I were aware of possible head injuries, and the minor ones I received were treated with extra, over-the-top care. But I learned that there’s a line between mentally pushing yourself and putting your foot down when your body – or your brain – is telling you you simply can’t do it. The trick is balancing between pushing yourself, yet listening to your body and knowing how close you are to the line so that you don’t cross it.

I made the sophomore basketball team when I was a freshman in high school. After serving as captain of the team my sophomore year, I decided I wanted to dance on the Pom Poms squad. So I tried out and danced on the team for two years. And my best friend made me run track, which I thought was the worst idea at the time, but couldn’t thank her enough when I was named one of the captains with her my senior year.

So to all the people who told me I wouldn’t play sports, I did.

And if you want to play, you can make it happen, too.

It wasn’t always a walk in the park, however. As track captain, I wanted to lift in the heaviest lifting group for strength training because I thought that was one of the only ways to show my leadership. There came a point when the weight put too much stress on my head, and I got headaches and occasionally felt dizzy. So I dropped down to a lower weight group because, while I can lift weights, I can’t lift that heavy of weights. And I figured out different ways to be a leader for my teammates – helping with core workouts and other drills. This is an example of the sometimes tricky balancing act I referred to earlier.

If you choose to play sports, there will also be some obstacles. One time, I got hit hard in the head with a basketball, and although any other athlete might not think twice about it, my parents woke me up every hour that night and quizzed me to make sure everything was okay.

So, is all the balancing and extra caution worth it? When your team or coach elects you to be captain, or you hit the winning shot, or you run that winning relay, I promise you it’ll all pay off. I participated in the Doug Bruno basketball camp in Illinois one summer. I was far from the best player there, but I did win the “Kate No Retreat, No Surrender, Never Give Up” Award out of all the girls in the camp. And if I had to choose, I would’ve chosen this award over most valuable player (MVP) any day. At the bottom of my trophy, it reads, “One cannot always control circumstances…One can and must control their attitude regarding their circumstances…”

I didn’t choose to live with hydrocephalus, and it still doesn’t define me. It’s simply a condition I’m living with, and sports helped me see this. Sports taught me mental and physical toughness to never give up when life throws obstacles and lists of “I can’ts” at you. So if you have hydrocephalus and you want to play sports, do it and do it with all your heart. Push yourself mentally, but listen to your body. Don’t let fear of judgment keep you from playing the game. Because we are different. You know why? Because we never retreat. We never surrender. We never give up.

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Ariel Yong, student athlete, hydrocephalusAriel Yong, student athlete, hydrocephalus

10 Comments for : Never Give Up
    • David Pagel
    • October 27, 2018

    Wonderfull. I too struggled with sports…no one including me knew I had Hydrocephalus…I had shunt placed at five but thought nothing of if after…I had tons of social issues, coordination, eye and motor issues, balace…I thought was normal…it would not become a huge issue till I was 38 and they placed another shunt..
    the oginal was removed at five due to infection and not replaced tillI was 38. Hello?

    • July 27, 2018

    Loved the reading this…my son who is 10 is a state champion gymnast …. we were freaked out when he started at age 7 but….it has helped him in more ways than one… we like your parents watch him like a hawk….but this kid can do anything !!!!

    • irina
    • October 18, 2017

    My son is 8. He wants to play sports but always faced I can’t list. He felt he was punished and given condition he doesn’t deserve to have. Your article was extremely valuable. It gave him support, carriage, coping skills and sense that he is not alone and that the condition doesn’t define who he is. Thank you for your article.

    • Florence L.Helgen
    • May 11, 2017

    My son had his first surgery when he was 7 months. Now he’s 7 and I’m always worried about him. I feel sorry for him because he cannot play sports for his condition , but he is very active.

  1. Reply

    I really enjoy your testimony about you never giving up. keep the faith. And god will always see you through of all your obstacles. In life. Love c.H.

    • Steven
    • August 7, 2016

    Hello. My name is Steven Satterfield. I am almost 26 but was diagnosed with hydrocephalus when I was 3 and have had over 50 shunt revisions.

    I am touched by your article. You’re right. Being hydrocephalus and being athletic is very risky and comes with many obstacle and setbacks. My surgeons told my parents when I was about 7 that I’d never be athletic/good at sports. I started really getting stronger and faster at about 17. Then fell in a rut and had to get back in shape until age 23. At almost 26, I have become a fitness trainer. I deadlift about 345lbs, I squat 315lbs, I run in the Warrior Dash, Tough Mudder, Half marathons etc. I love how you don’t make excuses. I always work hard in my race training, with my CrossFit and i run into a lot of problems with my doctors telling me not to do this. But I like that there is someone else with my illness and mindset that tends to fly in the face of their neurosurgeon’s expectations. Keep it up!

      • Jeannette Mazur
      • June 27, 2018

      Thank you for this. My baby is only 10 months old (and up to 6 surgeries already), but it’s so nice to know that he can still run and lift and be as active as he wants to be!

    • Wilbert Brisco.
    • July 21, 2016

    I have the same condition and this really touched me.

    • Luis Reynosa
    • May 31, 2016

    Its great to know therebis people out there who feel like i do! Living with hydrocephulus means im limited to what i want to do! But ur right i cant let this condition stop me from achieving some of my goals in life! XD

  2. Reply

    You are amazing! I already love you!

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