Any time I am asked to describe my daughter’s seizures, I automatically start describing what her seizures “look” like. Her eyes avert all they way to the left, her face turns to the left, her left arm stiffens. After 30 seconds or so, her arm starts to jerk, and sometimes the movements spread to other parts of her body. Her seizures are often started with a scared yell for help; she feels like she is going to fall right before her seizure begins.
We are very fortunate with Bella. Her seizures are usually controlled, meaning she can go months or even years with no seizures. She takes four different anticonvulsants two times a day, and there are side effects with those. However, no seizures is a great thing. During these periods of time with no seizure activity, I rely on my ears far more than I realize sometimes.
Bella is upstairs, I hear a loud noise. I listen without taking a breath. I hear her take a few steps, or start talking on the phone, or maybe even yell because she dropped something on her foot. I breathe a sigh of relief. She is okay, no seizure.
Bella screams. I listen without taking a breath. She yells at her sister or her dad for scaring her. I smile, and I breathe a sigh of relief. Somebody scared her, but there was no seizure.
So, what are the sounds of a seizure? Let me describe the sounds of one of Bella’s typical seizures. She screams/gasps a terrifying scream. Every person in our family knows this sound immediately. There is no mistaking it. There’s the visual part where her eyes and face turn to the left. Her left arm tightens, then it starts jerking, rhythmically; the thumping noise it makes as it hits the arm of the couch, the floor, or the bed is right on beat. Her chest is tight, not visibly taking in any breaths. There is no sound of normal breathing. If there are people around that haven’t seen a seizure before, there are gasps, sounds of concern, questions… Family that know the drill talk without looking at one another. “I’ve got her emergency meds… is it one or two mils?” “Should I get the car ready?” “Should we call an ambulance?” “I’m calling the doctor. Damn it. I thought we could decrease that med.” Then, when she comes out of the seizure, she takes a deep breath. We all know that sound. She’s out of the seizure – for now.
Bella is 22 now, and all of her sisters are older than her. They had many fights while they were growing up. They also had many laughs. They played their music too loud, they yelled too loud, they laughed too loud. Many, many times – even during those fights – my heart was happy. We were not in the hospital hearing the beeping of machines and call buttons. We were LIVING – playing, fighting, and not having seizures.
I often listen for the normal sounds. Normal breathing, normal footsteps, normal yells. Normal sounds help my heart relax.