Zebra: Chronic Illness Through Art
"I dream of never being called resilient again in my life. I’m exhausted by strength. I want support. I want softness. I want ease. I want to be amongst kin. Not patted on the back for how well I take a hit. Or for how many."
The ongoing trauma event that is chronic disease. The yearning for doctors to delve deep into disabling symptoms is often met with the cold steely eyes of modern-day medicine... that godly machine that purports to know all, yet conveniently dismisses much to anxiety or attention seeking, carefully sweeping the unknown under the rug with surgical precision. The poking and prodding more an effort to simply pay homage to a rote decision tree than to be of service. All to end in the infamously dismissive medical Haiku...
Your tests all look fine.
Try some yoga; exercise.
It’s all in your head.
A chronic illness is a debilitating condition that is generally incurable and ongoing. It is something that becomes a part of your being. You can’t escape it; you can only hope to lessen its effects. Most chronic diseases do not have definitive tests so determining what you are fighting can be one of the most frustrating challenges. And because we do not have clear definitions of diseases, or precise tests, and certainly few cures… making sense of it can be virtually impossible. It is beyond a struggle. It is a battle. A battle for which you are likely restricted to fight. Your armaments are minimal.
Zebra is what a patient is called when their disability does not fit the definition of a well understood disease. And because they are rare, they are often misunderstood and misdirected… if not dismissed altogether. One becomes trapped in a body that has betrayed them.
For this fine art project, I am manipulating liquid during the freezing process, and then utilizing specialized lighting techniques, in an effort to highlight the rarity of disease and what that experience feels like to an individual. Pain. Powerlessness. Being shamed. Isolation. Well-meaning advice. Dismissal. Despair. Patterns in ice can be fairly consistent as liquid freezes, but when different pressures are exerted, anomalies occur. Zebras. The included quotes are from various members of the online chronic illness community sharing peaks into very common real-life views and experiences.