How My Epilepsy Diagnosis Affected My Swimming Career

It was a Sunday morning around noon, about a month ago. A few friends and I were walking into the dining hall to eat after a night out. The last thing I remember before waking up on the ground was walking over to grab a water bottle to counteract the extreme dehydration I had been feeling that morning.

I opened my eyes and studied the 15 strangers circled around me, trying to figure out what could’ve possibly happened that would cause this much commotion. You had a seizure, an EMT told me. I was so disoriented that I didn’t believe him at first. It took me a few minutes to realize what that actually meant. I had no prior experience of having, witnessing, or even hearing about seizures.

I was immediately transported to the hospital. When I revealed to the doctors and nurses that I was a swimmer, they all had the same reaction: You know, it’s very dangerous to swim when you have seizures. You have to see a neurologist before you go back in the pool.

The next few weeks were filled with doctor’s visits and multiple tests done to determine what was going on in my brain. Finally, our questions were answered: I had myoclonic epilepsy. When people first heard, they all had the same question: Are you going to keep swimming?

When I first realized how dangerous it is to have a seizure while swimming, I was absolutely terrified. I turned to Google to do some research, and all of the sites that came up gave me the same result: people with epilepsy should never swim unsupervised.

It seemed bizarre to me. A Division I college swimmer, lifeguard, and former head swim coach who can’t swim unsupervised? How is that even possible? How did something that I do every single day suddenly become such a risk?

The athletic department at my university was hesitant to clear me at first. To be a swimmer with epilepsy, especially at the college level, was not a common situation. For a few weeks, I wasn’t sure if I would be cleared at all. I was devastated.

The school took every necessary step to make sure that it was 100% safe for me to return to swimming. After multiple phone calls with my doctors and tons of research, I was finally cleared to swim again. But then came the next obstacle: the mental aspect.

Realistically, I am at very low risk of having another seizure as long as I stay on my medication and avoid my triggers. However, it has become very real to me that from now on, I will always be at a higher risk of having another seizure than the average person. As someone with a history of anxiety, seizing in the pool quickly became a very real fear for me. With that realization, the self-doubt began to take over. Weeks before I was cleared, I had already been experiencing serious amounts of anxiety about returning to swimming. Would I be able to able to handle it? Even if I could, did I want to? And, most importantly, was it worth it anymore?

I will always distinctly remember one specific conversation that I had with my roommate. I was telling her how I hadn’t realized how few epileptic swimmers there were. Instead of agreeing that it was going to be difficult, she asked me, So why not be one of the first?

After a week or so of debating, the answer was concrete: of course it’s worth it. Swimming is a huge part of who I am. It’s what gave me my work ethic, my values, and my motivation. Why let a little bit of fear keep me from doing what I love?

Regardless, getting back in the pool and conquering that fear has been one of the hardest things I have ever done. Every day, as I jump in for warm up, my mind races with the possibilities. As much as I’d like to say that I will eventually get used to it, I’m not sure that the fear will ever completely go away.

Do I wish that things could be different? Yes. Do I wish that swimming didn’t pose a more serious threat than other sports would? Of course. Is it frustrating that the thing that comes more naturally to me than anything else has suddenly become a challenge? More than anything. But just like every other aspect of this sport, my epilepsy is making me stronger. My parents, coaches, doctors, and best friends have shown more support than I could have ever asked for.

I will never be the same person or swimmer I was before, but a stronger one. One that is okay with taking risks and giving it their all.

And at the end of the day, that’s what counts the most, right? Doing what makes you happy? Because in the grand scheme of things, three minutes on the ground won’t ruin 12 years of hard work if I can help it. And as corny as it may sound, being at risk of losing something makes you appreciate a hundred times more. Trust me.

 

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lsd
6 months ago

love the swimming epilepsy stories! I will be 64 next week and haven’t let complex/partial seizures stop me from swimming. Yet, since I never know when the next one will be, my problem is driving. One time my husband took away my car keys away for 5 years. I’ve been brain-injured since 1979. Life hasn’t been easy yet praying, faith, and most of all love has helped me win awards and staying positive. LSD 5/31/2022

Karen
1 year ago

Thank you for sharing your story. It is so encouraging and inspiring to so many that are in the exact same situation! I am working my way back into the pool myself. I felt like I was reading my story, too while reading yours – wow. I too was a collegiate athlete (volleyball) and swimmer when I had my first episode, but this was a long time ago. At the time, the athletic director and my coach did not know what to do with my case. Those were different times. I’m in my 40s now. Transitioning to the medication, then trying another (while studying and working) was a true struggle as I navigated my new normal of being off the… Read more »

Ellen
1 year ago

I am 50 years old and I was a college swimmer with epilepsy. I swam the 1650, 200 IM, 200 Free and 200 back plus I was a relay person, whatever race my coach put me in I placed. Live your life. My son has epilepsy and he lifeguards – just live your life!

Julien Vincent
2 years ago

My son, age 12, had a first long seizure last May. He wasn’t swimming at the time and wasn’t doing much sport (that was right after COVID-19 lockdown but pools were still shut down). He is now taking medication (kepra). He had no seizure since the first one and look so fine (ok, he’s under medication, but we don’t know whether he needs it).
He was swimming since age 5, was doing well while still very young (still is faster than his old dad). We can’t believe swimming is over (at least competitive swimming), we’ve been surprised but we’ve been turned down by the coaches. I’ll try to get him into others sports.
Thanks for sharing your story,… Read more »

Tony
Reply to  Julien Vincent
4 months ago

Wow! Coaches not interested. That is so stupid. Look up Imogen Clark (British Swimmer), shes competing at the Commonwealth games for GB this year, is an ISL swimmer and has been an epileptic her whole swim career.

If he loves swimming then don’t let anything stop hi. It is manageable.

Louise SpwtSpeth h
5 years ago

I was diagnosed 14 years ago, and have had a lot of the same fears. Over time, and especially as the years have passed without having any problems, the fear & anxiety have decreased. Stay on your meds, keep up with good self-care (for me, adequate rest is key), and stay focused on the good days. Epilepsy is still misunderstood, but far easier to live with than it uaed to be.

Rita
5 years ago

Life is full of risk, the greatest is that you become so fearful that you don’t live. You are lucky to have a family, team, and teammates that support you. Best of luck to you both in and out of the pool.

Rita Costello

Kendra
5 years ago

I have a similar story to yours! I am 20 years old, and I have been competitively swimming since I was 7. I now am in the middle of my third year swimming in college. I have had Cyclical Vomiting Syndrome, Chronic Migraines, and Epilepsy since I was 18 months old.

When I was a freshman in college my whole life, much like yours suddenly changed. I started having migraines so bad I couldn’t see, or even balance enough to walk on my own. Soon after that I began to have more seizures. I have grown up having partial complex seizures. Next thing I know am having tonic clonic (grand mal) seizures. I still mainly have partial complex seizures,… Read more »

Meg
Reply to  Kendra
1 month ago

Do you have any advice on how to get cleated. My son is a freshman swimmer in college and has full clearance from neuro but sports doc is hesitant . We are fighting everway possible.

SwimDad
5 years ago

I admire your bravery in the decision to continue swimming. One of my daughters experienced a few events which mimicked the post-ictal phase of seizures earlier this year. Two eeg’s showed spikes indicative of Juvenile Myoclonic Epilepsy, but that has since changed along with her diagnosis. We didn’t put her on meds as there was no definitive seizure, but for a period of four or five months we lived with a diagnosis of JME. In that time I did a lot of research and learned a lot. There is some research that shows physical exercise actually normalizes epileptiform brain wave activity in people with one of the generalized epilepsies (which JME is one) and makes having a seizure less likely.… Read more »

About Bryana Cielo

Bryana Cielo

Bryana Cielo Shortly after Bryana Cielo’s birth, she developed her love of water at her family beach house–and hasn’t stopped since. At the conclusion of her swim lessons at age 7, it was recommended that she try out for the local summer swim team. After her first season, she won the …

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