Anyone who lives with epilepsy understands how stigmatized epilepsy makes people feel. We ask, where is our national spokespersons or why don’t we see media campaigns about epilepsy? After all, the prevalence of epilepsy makes this neurological disorder a major public health problem. Epilepsy is not benign. As many as 50,000 people a year die prematurely from the consequences of seizures. That is more than die from breast cancer.
I am at an age where friends frequently share stories about high blood pressure, diabetes, cancer and other illness, but never once have I heard anyone talk about epilepsy in public, even when I know they live with the disorder. Yet, I have had many experiences where people, once they knew where I work, share quietly that they have epilepsy, as if to say, “I wish I could talk about this.”
Two years ago, the Epilepsy Association in Cleveland decided to help people talk about epilepsy. With the help of some very generous Clevelanders, we commissioned Katherine Chilcote to paint a mural about the journey of epilepsy. We then installed her 32 foot by 10 foot work of art on the outside of our building. We did this to tell the story of epilepsy, generate awareness of the Epilepsy Association and to give persons with epilepsy a place in the community. We felt art accomplishes these goals.
To conceive of the imagery, Katherine interviewed 34 individuals in Cleveland and Seattle who live with epilepsy, and she conducted one community charrette (a planning dialogue) during the spring of 2014 in Cleveland. Through this process, Katherine gained insights into the shared experiences of living with epilepsy. Her mural, “Beyond the Storm” reflects these shared experiences.
The mural’s imagery describes a voyage or journey that moves people beyond the circumstances of their health condition and life’s circumstances. Katherine was inspired to paint images of birds and tornados as a reflection of the physical experiences of seizures. Moving beyond these experiences are expressed through a vast horizon in the painting.
Katherine came to understand that living with epilepsy means being prepared to live each day anticipating seizures and overcoming the fear of the obstacles they create. Through this project, she hopes we come to understand that health obstacles give us an opportunity to grow into stronger people. During the interviews, she heard a common expression of knowing one’s own strength to withstand the neurological storms of seizures and to move beyond these episodes. She heard that coping with the paradoxical realities of being one person while seizing and another while healthy were different for each individual. And, she discovered that while epilepsy presents many commonalities, the epilepsy journey is uniquely experienced. For some, the condition is a minor distraction, while for others it presents huge obstacles. It is a paradoxical life to be lost then found, and to be sick then healthy over and over again.
What Katherine wants us to realize through this work is that all persons with epilepsy have a powerful ability to accept oneself amidst a world that in uneducated about epilepsy, and often reacts cruelly based on the ancient stigma associated with the condition. She thinks of this mural as a prelude, or wake up call, for the work needed to create a more accepting culture.
A few weeks ago, on a very cold day, an idea that began many months ago finally became a reality.
Katherine installed “Beyond the Storm.” This spectacular mural is her gift to the city, and to all those with epilepsy.
The following individuals/foundations contributed to the project and the Epilepsy Association is very grateful for their support.
The Char and Chuck Fowler Family Foundation, Amy E. Kellogg, Frank H. Porter Jr., J. Patrick and Diane Spirnak, Tuni and Lee Chilcote, Kathy and James Pender, Reginald and Lynn Shiverick, Medical Mutual, Kitt and Mark Holcomb, Paula Sauer. The project was also supported by:
We invite you to come see the mural at 2831 Prospect Avenue, Cleveland Ohio. We also invite you to share your story by leaving a comment. What do you think the images in the mural mean?
Written by: Andrea Segedi
Andrea is on staff at the Epilepsy Association in Cleveland, and worked with the volunteers, donors and Katherine to create this mural.