Photo: Halona Blow Hole Hawaii

You are here

Epilepsy Awareness, a Personal Story

Submitted by genesisl on Aug 16, 2017

August 16, 2017

By: Naomi Manuel and Tammy Tom

Thirty six year old Noa is completely functional. He eats, drinks, and bathes himself; holds a conversation; takes his meds; reads the newspaper; and has an opinion. No problem. So Kila was happy to oblige when his aunty asked him to stay with Noa and his 8 year old nephew while she went on a day trip to O‘ahu to bring her grandchildren to Maui for a visit.

Kila was hanging out with a neighborhood friend under the tree out back and would occasionally poke his head in the kitchen door to check that everything was as it should be. Noa and his brother were inside watching TV, having a snack – everyone was still breathing. That’s all that he was responsible for and all he was prepared to deal with.

After an hour or so, Kila heard a door shut inside. He heard knobs squeak and then the sound of a shower. Kila knew Noa was supposed to tell him he’s going to take a shower but figured it was OK. He continued conversation with his friend. A few minutes later, however, he heard banging and low moaning groans from the house. He pounded on the bathroom door, but no response. Pounding on the locked door did not change the sounds coming from within. So Kila threw himself into the door and broke it open.

He was not prepared for the sight in front of him. With the shower still on, Noa was having a grand mal seizure. He had witnessed Noa’s petit mals, where he would stare out into space, or his fingers and arms would tense and curl up, but he’d never seen a full blown convulsive seizure of this magnitude. He had his neighbor friend call 911, shut off the water, and struggled to protect Noa’s head from hitting the fixtures in the bathtub.

With confirmation that an ambulance was on the way, Kila called his aunty. The first thing she said was, “DON’T LET THEM TAKE HIM TO THE HOSPITAL!” Kila thought she was out of her mind. Did she have any idea what he was dealing with? Has she ever seen this happen before? This can’t be normal!!!!

As he argued with her that he’s not taking any chances, he barely noticed that Noa was slowly relaxing and his intense grunts softened to low rumbles in his chest. Kila’s adrenaline was still surging when the ambulance arrived and his aunty told him to give them the phone so that she can talk to them. After a few minutes, Noa slowly opened his eyes and started to get up. EMS asked him if he was ok, and Noa nodded his head, yes. His eyes were still groggy and slightly distant, but he said that he needed to get dressed. EMS told him that they believed Noa will be ok. His seizure was less than 5 minutes and his vitals were back to normal.

What just happened? Kila wasn’t prepared for that?

Epilepsy is a neurological condition in which a person has repeated seizures. A seizure is a sudden, brief disruption of electrical activity in the brain. Epilepsy is a general term for a range of seizure disorders. It is the 4 th most common neurological condition after migraine, stroke, & Alzheimer’s disease.

15,000 individuals live with epilepsy in Hawai‘i.

If Kila had simply known the basics of seizure first aid and understood that the type of seizure he witnessed was not a medical emergency for Noa but, rather, was what he and his family live with daily, Kila’s experience, approach and response would have been much different. He could have been more calm, timed the seizure, and importantly been more compassionate and sensitive to Noa, as he, along with 15,000 other people in Hawai‘i, is the one who lives with the uncontrollable occurrence of seizures.

Submitted by Naomi Manuel and Tammy Tom

Photo: Naomi Manuel

Naomi Manuel is Executive Director of the Epilepsy Foundation of Hawai‘i, an organization that provides supportive programs to individuals with seizure disorders, advocacy on behalf of individuals living with epilepsy and their families, and education to the general public on seizure first-aid and epilepsy awareness.

Photo: Tammy Tom

Tammy Tom is a faculty member at the University of Hawai‘i at Mānoa Center on Disability Studies (CDS). She has 17+ years of experience collecting, managing, analyzing, and reporting data. Since 2006, Tammy has been the American Statistical Association (ASA) Hawai‘i Chapter President-- a position which supports analytic and technical collaboration and local capacity building.