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 MoreYayoi 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 Weiwei
Read MoreRoadtrip 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 Hemmingway
Read MoreToday, the Bill & Melinda Gates Foundation Discovery Center will present one of my designs in Design with the 90%, an exhibition curated by Cooper Hewitt, Smithsonian Design Museum.
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 MoreSoon 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 MoreSo, 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 MoreUncertainty 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 MoreI 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 MoreI can hardly believe April is approaching and in a week I'll be 39 years young. I feel like 2018 has sped passed me in some cosmic blur and I'm doing my best to pick myself up and dust myself off.
No exaggeration, I've cried every single day and night of 2018.
My health has spiraled out of control with chronic symptoms not directly related to my genetic muscle wasting disorder, GNE-Myopathy. Last year when my symptoms became too big to ignore, I began an aggressive search for why and have seen at least a dozen different specialists.
Symptoms like debilitating chronic nerve pain, chronic itching, and chronic pain have become new friends of mine, but not the good kind.
Read More“I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have loved and been loved; I have been given much and I have given something in return; I have read and traveled and thought and written. I have had an intercourse with the world.
Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.” -Oliver Sacks
Read MoreThis is an old one but still one of my favorites. For me it exemplifies an array of inner struggles.
When you experience a life-altering change, it's difficult. When that life altering change is unforgiving and relentless in its taking, it can feel like some colossal cruel joke. And, when you open yourself and your life as an advocate - for a condition that worsens every day - balancing the constant loss and sound advocacy is just another level of difficulty.
I have GNE Myopathy, formerly named HIBM. GNEM is a rare genetic and degenerative muscle condition that ravages until there is nothing left to take.So far I've lived with GNEM for 17 years.
GNEM condition fits under the “Orphan Disease” or “Rare Disease” umbrella. A rare disease is any disease 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.
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