It all began with an idea to describe what life was like living with epilepsy. To capture the emotional journey many face, but few dare to talk about it due to fear of judgment. Epilepsy is more than seizures. It is constant medication changes, decreased quality of life, and increased sadness, anger, anxiety, and shame. For some, epilepsy can be a lifelong battle. I created this series because I wanted providers to understand better what goes unspoken.
Generalized Seizures: The pipe cleaners on the head represent the seizure which is affecting the entire brain, causing the person to become unconscious. The black represents shame and stigma.
Focal Seizures: The pipe cleaners in this image represent a focal seizure. People with focal seizures can have auras before a seizure. They may have odd sensations, tastes, or smells. I wanted to capture this by the designs on the face. During the seizure, the person may stare with eyes wide open or be unresponsive for a few seconds to minutes. The tissue paper represents the out-of-body experience I occasionally felt.
I Don't Want to Talk About It! : This piece is supposed to appear hollow, cold, and lifeless. The metal represents armor; it protects what is difficult to share, such as feelings of isolation, aloneness, and sadness.
Lost Within: People within the epilepsy community commonly experience multiple medication changes, which can make them feel numb, foggy, slow, and have difficulty concentrating. This sculpture attempts to capture this effect.
Starting Over, Again! : While depression is commonly addressed, anger is given less attention. Because of my seizures, I lost my independence. The red represents anger, and the keys represent a loss of independence; everyone had the keys but me.
Shh..... Don't Talk About It! : This piece is supposed to feel ugly, lonely, plagued, and stigmatized. It represents shame and fear. Sometimes, it can be hard to share about seizures; you might be viewed as a liability, unemployable, unworthy, or bullied by society.
My External Hard Drives: This piece is meant to reflect memory loss. Everyone had my memories but me. I felt like the seizures took my memory; the broken CD at the base of the sculpture illustrates this.
Secure the Perimeter: This piece illustrates the fear my support system had for me because, while living with seizures, I could not see the scary parts of the world. I had tunnel vision.
I Do It Myself! : While having seizures, I wanted my independence; I didn't want to be over-monitored, and when I felt trapped, I became reactive.
We We're Looking For Hope : This piece represents the weight of epilepsy on the person and family, depressed, lacking hope, and discouraged. The white birds represent hope with the possibility of a brain surgery.
The Transformation: This piece illustrates my experience with brain surgery. The mechanics on the face represent how my seizures affected my speech and reading comprehension. After surgery, my abilities could blossom, as illustrated by the flowers and butterflies on the sculpture. The face is distorted because, along with the transition, my identity changed.