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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Fluidg
3 years ago

Being blindsided by an event like that has to be a very disorienting and frightening blow, especially for a swimmer. The first thing that jumps out of your account is “extreme dehydration”. I’m not a physician, but I suspect that without that critical factor, you would still be unaware of your condition. Nothing good happens when we’re dehydrated, especially when our electrolytes are depleted. Our entire bodies (including heart and brain) require stable electrical activity to function. When that ability is compromised, things go really wrong. I had a classmate in grad school, a healthy 20 something female, who went out drinking to celebrate the end of the semester and suffered cardiac arrest due to severe dehydration. Thankfully she survived,… Read more »

A E
3 years ago

I’ve got some personal experience with this and admire your willingness to get back in the water. I can identify with the anxiety about the prospect of another seizure, and encourage you to keep swimming. The anxiety fades with time as you feel more and more normal. And – as I’m sure you already know – good exercise helps alleviate stress, which may contribute to seizures. Hang in there! Great work in sharing your story!

A N
3 years ago

Thank you for sharing your story. Especially during epilepsy awareness month! I am also an epileptic swimmer and the worst part is when people do not understand the disease but feel the need to tell me what I can and cannot do. (Shouldn’t drive, shouldn’t swim, shouldn’t hold a baby, shouldn’t climb a ladder, shouldn’t be left alone, shouldn’t hold a certain type of job) My condition is controlled on medication and it has been several years since I have had a seizure. The only change I have made to my swimming is to always alert the lifeguard to my condition. Lifeguards can be pretty zoned out during swim practice or lap swim. 10% of the population suffer with this… Read more »

Dawn Bowie
Reply to  A N
3 years ago

My daughter is nearly 15 and a competitive swimmer. Two weeks ago she experienced her first ever seizure which was followed by a second 6 days later. She has undergone a number of tests which so far have shown nothing but it has been implied that it may Ben epilepsy but doctors at present are unable t formally diagnose this. She is desperate to get back swimming but we have been told that this may not be possible and we are awaiting news from swim England. Can anyone give me any advice on what I should do as she will be devastated if she cannot continue to swim.

Bryana Cielo
Reply to  Dawn Bowie
3 years ago

Email me! We can talk more about it and I’ll offer any advice I can! ([email protected])

Maureen Kastambolidis
Reply to  Dawn Bowie
2 years ago

Dawn, Ive been an epileptic since I was 10 yrs old and love the water, I’m now 57, not a great lot was known back then. I did have a seizure at Bondi Beach and was dragged out by 5 guys cause I was head down in the water. I’d let her swim, I still do, but just have someone keep an eye on her whilst in the water, we can’t stop living. Life goes on and it would be boring if we didn’t get to live it. Somethings I didn’t do like drive or be a hairdresser which is understandable. Treat her normally as she’ll keep her confidence. I find stress and lack of sleep can bring them on… Read more »

Luke
3 years ago

I see no reason why epilepsy should stop you from swimming, Davis Tarwater had epilepsy as a child and went on to win Olympic gold.
You say that you had a major seizure after a night out, lack of sleep is a trigger for Myoclonic epilepsy. (Who knows you may had Juvenile Myoclonic Epilepsy for many years, and dismissed morning clumsiness as just being a swimmer).
While doctors try to tell you swimming is risky if you have epilepsy, the chances of having a seizure while swimming in a pool is in fact lower than having a seizure in the bathtub.
Be positive about your epilepsy, I like the saying “epilepsy is proof of having a brain,… Read more »

SwimDad
3 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 »

Kendra
3 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 »

Rita
3 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

Louise SpwtSpeth h
3 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.

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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