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Epilepsy Blog Relay™: Maureen on exploring Hawaii with epilepsy

This post is part of the Epilepsy Blog Relay™, which will run from Nov. 1 to Nov. 30, 2017.  Follow along!

I didn’t go to Hawaii to lay on the beach. I went to Hawaii for adventure. I went to dive into the ocean, to kayak over the waves, to snorkel on the reefs, to hike in the jungle, and, of course, I went for the cliff jumping.


The thing with epilepsy is there is a chance at any moment you can have a seizure. Being aware that at any given moment a seizure can strike makes beautiful and exciting moments become frightening. Diving in the waves, climbing a tree, or gazing into the ocean from a viewing point become hazardous activities with epilepsy. It’s hard to explain the concern of knowing a seizure can happen at anytime, but during my Hawaii trip it was a constant battle not to let that fear interrupt my vacation. Especially while exploring the depths of a dark lava cave.


Exploring Hawaii

We found the Kaumana Caves on a whim and although it wasn’t on the itinerary we decided to stop and see if it was worth exploring.  There was no parking lot, no ticket booth, and no tour guide, just a beat up sign that read “WARNING, NO WALKWAY, NO LIGHTS, SHARPE, LOOSE ROCKS.” To be honest, this is my type of tourist attraction! At the same time, it’s attractions like these that get my heart rate going and head spinning with the “would ifs.” But that’s part of the fun, right!?


No more stairs!

To get to the cave you must first walk down a steep set of wobbly, bright yellow stairs. The type of stairs you would see at temporary construction site. The type of stairs I dread! The enormous mouth of the cave is bright, welcoming and full of foliage. But the moment you step inside, darkness surrounds you. Despite the massiveness of the cave I felt claustrophobic. Not being able to see more than my iPhone flashlight could illuminate made me feel vulnerable. This darkness made me ponder the consequences of a seizure (and also stirred those childhood fears of vampires!).

If I had a seizure now…

The space we had to maneuver went back and forth from large, hollow caverns that could accommodate hundreds of people, to crawling between rocks on our hands and knees. I’m not sure which were more terrifying, the grandiose caverns that seemed to never end, or climbing and squeezing carefully through the rocks, hoping to find another clearing. In either situation my mind went to “if I had a seizure right now, what would happen?” To exacerbate the situation, I was also pondering what type of cave creature could be around the corner.

In the large caverns, I wondered what it would feel like to wake up in an oversized pit seized by darkness. Regaining consciousness from a seizure can be a very frightening moment, so it’s hard to image how intense that moment would be here. I wondered if my husband would be able to keep calm and calm me. My visions of having a seizure in a tight space were worse. I thought about the possibility of being unable to move and being stuck between rocks. I understood if I got hurt, or any of us got hurt, there was no quick and easy exit strategy. Despite these considerations I kept pushing myself to move forward. We walked for about 45 minutes before we decided to turn around. I think my travel mates had their own unsettling fears urging them to turn back. Vampires, perhaps?


The way out didn’t seem as terrifying. We already had discovered the paths to follow and that knowledge filled me with confidence. Enough confidence to persuades my travel companions to turn off all flashlights for an entire minute! Now, that was scary!

New experiences

Exploring the Kaumana Caves reminded me how new experiences can seem overwhelming. But once you have done it- you’ve done it! And it’s not as nerve-racking as it once was. This applies to all new experiences. The first day of school, a detour on your usual route home, visiting a new place, or striking up a conversation with the new hire in the office. All new experiences can feel foreign or intimidating. Challenging yourself is how we develop our daily routine, make friends, enjoy vacations, and discover new passions. Whether it is taking the train for the first time or adventuring into the Kaumana Caves, your new experience begins with just one step.

NEXT UP: Watch for Dr. Adelson’s story on livingwellwithepilepsy.com. For the full schedule of bloggers participating in the Epilepsy Blog Relay™ visit livingwellwithepilepsy.com.

TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.

Follow Maureen Knorr:
I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy!

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