"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 have created detailed sets which I then submerge into water for freezing. Once frozen, I remove the set from the mold, light it, photograph it and develop it. I do this 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 peeks into very common real-life views and experiences.
"Every night I go to bed, I pray very hard that I should not wake up in the morning. So far, I’ve not been successful. I woke up today. Again."
"One of the most difficult things about being chronically ill, is how fast people in your life move on without you."
"'But you don't look sick!' Every chronic disease and disability exists on a spectrum and no two people's experience is the same. Be kind and empathetic."
"14th century doctors be like 'I don’t know what’s wrong with you but you’re a woman so I diagnose you with witchcraft.'
19th century doctors be like 'I don’t know what’s wrong with you but you’re a woman so I diagnose you with hysteria.'
21st century doctors be like 'I don’t know what’s wrong with you but you’re a woman so I don’t believe anything is wrong with you and won’t diagnose you.'"
"Is anyone else tired of being the wrong kind of sick? Not temporary enough for friends and family to comfortably get back to their lives? Not well-defined and standard enough for doctors to care to help? "
"Chronic illness things we don't talk about enough: Grieving your healthy life. Told you look well while feeling awful. Feeling guilty about rest. Being gaslighted by others. Struggling to accept it. Anxiety about plans. Wondering if it will ever get better."
"Me, a wheelchair user: 'Don’t you have any accessible exam tables?'
Med tech: 'No. Most of our patients can walk. If you really need it, I guess we can lift you up on the table.'
Accessible medical equipment is the law. Carrying a disabled patient is not accessibility. "
"People with chronic illness don’t fake being sick. We fake being well."
"I'm not unreliable, my health is."
"The medical system is broken. The only reason I have diagnoses now is because of the chronic illness community... because of my chronically ill friends and the resources and doctor recommendations they took the time to share with me. Thank you. #NEISVoid"
"One of the problems of living on your own with a condtion like MEcfs is that sometimes things need to be done but you just can't do them, and there's no one to step in and help."
"Woman in pharmacy to me, a wheelchair user; ‘I couldn’t live with what you do. Being in a wheelchair is not a life. I’d rather kill myself.’
Every disabled person has heard these words.
The devaluation of disabled lives is persistent and pervasive."
"You know what’s bad for my mental health? My physical health."
Each piece of art is available in multiple sizes, simply go to the Fine Art Store and click on the shopping cart icon next to your chosen image to purchase.