“We are the Zebras; the rare, complex, undiagnosed and multisystemic disease patients attempting to heal in a medical system designed to see only horses. Our stories often remain untold, neglected or invalidated in the current medical paradigm. But we have the power to touch hearts, open eyes and expand minds beyond reductionist diagnostic practices. By sharing our challenges and experiences, we help raise awareness of the need for compassionate, accessible care in complex medical cases.”
-Dana Anahalt, Zebra Tales
We have been led to believe it’s just one person or one party creating the demise of our country, it’s not. It’s systemic. The system is riddled with poison and both republicans and democrats have been putting that poison into their pockets for decades which results in our current system that deeply lacks morality, fairness and justice.Read More
Self-doubt is universal. The phantom of ourselves imposes the will of self-doubt and insecurity onto all of us. I experience self-doubt all the time as an artist, designer and a disabled person forced to prove their worth in an able-bodied world.Read More
For weeks I've had dozens and dozens of bug bites all over me from sleeping at night (Jason has zero) and during the day. I'm sitting here working while mosquitos and bugs are feeding off of my legs and feet and there is nothing I can do about it because I can't move my legs nor reach them.Read More
You don't realize how much you need your neck until you're forced to realize how much your neck does for you and what happens when it starts dying. I will push myself to draw until I absolutely cannot, but why must everything in life be so difficult? Why am I constantly saying goodbye?Read More
“A human body is a conversation going, both within the cells and between the cells, and they're telling each other to grow and to die; when you're sick, something's gone with that conversation.”
-W. Daniel HillisRead More
“Awareness is what happens when the body malfunctions.” Splitting oneself from the pain is a common psychological response to pain and trauma. An unconscious survival technique. Frida split herself through art.
“And Frida is the sole example in art history of someone who has torn open her breast and her heart in order to tell the biological truth of what she feels inside them.” -Diego RiveraRead More
For the last few years I have made it a birthday goal to try something new — particularly something I’m afraid of like heights. As a result I’ve had some amazing adventures like skydiving over Sonoma County and parasailing over Torrey Pines Pacific coast. But, as I’ve been sharing, I’ve been under a lot of physical and emotional stress…Read More
Today is international Rare Disease Day; a day to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
A rare disease is any disorder that affects a small percentage of the population, therefore has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. Basically, not profitable enough in a multi-billion dollar sect of high profit drugs.Read More
“I am fading away. Slowly but surely. Like the sailor who watches his home shore gradually disappear, I watch my past recede. My old life still burns within me, but more and more of it is reduced to the ashes of memory...Once, I was a master at recycling leftovers. Now I cultivate the art of simmering memories.” -Jean-Dominique Bauby, The Diving Bell and the ButterflyRead More
Ron Finley is a designer, artist and a self-taught gardener. But he’s so much more than these boxes. Finley, lovingly known as the “Gangsta Gardener”, is a community leader who has traveled around the world giving speeches; with a greater message of thinking bigger and freer.Read More
I loved interacting, especially with those who felt open and vulnerable enough to share what they were going through. I feel privileged when people approach me with their struggles and share how they relate to my story.
One of the unexpected side effects of sharing my story is it has given permission to everyone around me to share some of their most darkest, deepest struggles and secrets, and this art show was no exception. Strangers came up to me sharing their stories of illness or depression. They shared stories about their loved ones struggling with illness and what that is like to watch. What I have learned is most everyone is struggling with something and people desire authenticity.Read More
Yayoi Kusama + Ai Weiwei Marciano Foundation, LA, Exhibition.
“If my art has nothing to do with people’s pain and sorrow, what is ‘art’ for?” - Ai WeiweiRead More
Roadtrip to Eastern Sierras.
“You expected to be sad in the fall. Part of you died each year when the leaves fell from the trees and their branches were bare against the wind and the cold, wintery light. But you knew there would always be the spring, as you knew the river would flow again after it was frozen. When the cold rains kept on and killed the spring, it was as though a young person died for no reason.“ - Ernest HemmingwayRead More
Design with 90% features more than 26 innovative projects from around the world that showcase “design solutions toward a more equitable world by increasing access, improving health, and empowering opportunity for the most marginalized communities around the world” proving design can be a force for social change.Read More
“I don’t paint dreams or nightmares, I paint my own reality.”
After her trolley accident Kahlo neglected her dream of becoming a doctor and turned to painting during her immobilization periods. A steel pole went through her hip and she was left with multiple broken bones, including her pelvis, ribs, spinal column, collarbone, multiple fractures in her leg, a crushed, dislocated foot and a dislocated shoulder. During the accident an iron handrail pierced her abdomen and uterus leaving her unable to have children; a conspicuous subject matter that commonly shows up in her work. Her parents had a special easel built so she could paint from bed and thus she began painting out her life.Read More
Soon after receiving my new wheelchair I was noticeably melancholy.
"Another milestone", I thought. "Why must this disorder continue inching until it has everything?"
It was mixed emotions. On one hand I was nothing but grateful, on the other hand the future keeps bearing in closer. I quickly picked myself up and remembered to relish in increased mobility. This is good news. While it's difficult to approach another milestone, receiving this chair has been the highlight of an extremely difficult 2018 and past one and a half years, really.Read More
So, even though at times it feels like I've lost my physical grace and feminine expression through the loss my leg's function or the hands that apply my make up, I know it is not these things that hold my image, yet it's because I can't do these things and what has resulted because of it that really adds the pages to my own book. All that is waiting is for us to author and accept it.
We need to find it within ourselves to be ok and happy with who we are. If you're not ok, then no one else will be ok with you.Read More
Uncertainty is a friend of mine.
The unknown is uncomfortable for most of us but we don't know how much until it's staring us in the face. For some of us the reaction is to become further unknown. We feel emotionally isolated and thus further isolate ourselves.
What I have learned about uncertainty is life is to be lived and not controlled and as much as I’d like some control over my body and this life, control is merely an illusion…for all of us. “We don’t know the future, much less control it. And yet we continue to believe in the illusion of control. We face a chaotic and complex world, and seek to control it.”Read More
I spent my weekend celebrating my birthday early. Every year I usually try something new, particularly scary, to celebrate another year like skydiving, parasailing, scuba diving or some big road trip. It’s a way for me to fight back against this progressive condition and welcome another year of it.
Since 2018 has been rough I opted for an anonymous quiet hotel-cation and relaxed. I guess that is something new for me?
In all times of struggle, always look for the beautiful for it's all around us.Read More