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
I 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
This post was meant to be Part 2 to my “What is Inspiration?” blog post from last week’s Rare Disease Day. I wasn’t feeling well so here it is late. This is a very old illustration but portrays the subject of what my next set of illustrations will touch upon - less about loss and more on the physical pain (unrelated to my GNE condition) I’ve been experiencing and how it feels — pain many endure their entire lives.
Last week I quoted Oliver Sacks:
This quote is from Sacks final op-ed in the New York Times. He wrote it two years ago on his deathbed. He died of liver cancer at 82. He lived a remarkable life.
In the last days Sacks expresses he is able to see his life as “from a great altitude”, sensing the connection of all its parts. Humility and lack of control over you body can do this. I’ve felt the same the past 16 years. I see everything different - like a single snapshot etched into my mind.
I have wanted to write an article on Dr. Sacks for years but admittedly my blogging has been sporadic. I’m trying to get back into it.
I had read about Oliver Sacks before my disease started, but obviously now that I’m living with a condition of my own, my perspective sheds a new light onto his work and I understand more.
* * *
Oliver Sacks was a neurologist, physician, professor, author and humanist. Born in London to a family of physicians and scientists, Sacks would eventually follow in his parent’s footsteps but first he moved to America where much of his life’s work and contributions occurred.
As he wrote in his memoir On the Move, he doubted pursuing a medical career after completing his training, so his life’s work in neurology didn’t come until after he accomplished a few “selfish” obsessions, like his adoration for motorbikes. He took off to motorcycle across North America and other regions. Afterwards he found himself in California where weight-lifting became his newest mania. He even broke records.
It was fun until he realized, “Is this all? Is this all there is to life?”
Sacks wrote some 10 books on patient case studies. His work has inspired films, playwrights, animations, opera and music.
Many of Sacks’ patients had devastating and irreversible neurological conditions. His work in humanizing medical textbook conditions spanned from Parkinson’s, Autism, hallucinations, depression, Phantom Limb Syndrome, Tourette syndrome, Schizophrenia and Alzheimer’s.
He investigated the world of music and its impact on the brain and explored deaf people and sign language culture. He believed the brain was the most fascinating thing on the planet and dedicated his life to understanding the brain’s peculiar and complex pathways.
Sacks openly spoke on being secretly gay during Alan Turin years, a drug addiction that almost killed him, three decades of celibacy and life as a patient as he chronicled his own progression.
For someone so attuned with interpersonal relationships, Sacks self-imposed decades of celibacy due to guilt over his sexuality. It wasn't until 2015 when he faced terminal cancer that he came out. He broke his decades long celibacy at 75 when he began a relationship. He experienced six years of deep love with his partner until his passing.
Oliver Sacks believed understanding people could elevate medical science. He spoke intimately of specific case studies in order to instill a deeper understanding from the mainstream world. In many of his writings as he shares patients' stories, I sense a mirror into his own experience of living with a condition.
* * *
Sacks’ first book was Awakenings. He only wrote this case study book because his patients asked him to tell their story. Like many with diseases and constant conditions, the person simply wants to be seen and understood.
Awakenings was eventually made into an award-winning film which led us through Sacks’ discovery of a drug that benefited Encephalitis Lethargica. Encephalitis was an epidemic from 1917-1928. It was also known as Sleeping Sickness. This disease attacks the brain, leaving the person in a catatonic state, unable to speak or move. During this period Encephalitis spread throughout the world, touching some 5 million people. Some died, most never returned to their pre-existing state.
In Awakenings Sacks’ patients were awakened after decades of catatonia due to his care. But these patients were also forced to learn how to live in this new life. The way I see it, it’s as if this disease was a form of time travel.
How do you return to the familiar now disguised as the unfamiliar?
In The Man Who Mistook His Wife for a Hat, Sacks chronicles a condition called Visual Agnosia, a condition where the person, or rather their brain, fails to recognize objects.
Another specific case study Sacks spoke on was Charles Bonnett Syndrome, a condition where visually impaired people experience lucid hallucinations. The mainstream medical world often disregards or masks what they do not know so they naturally disregarded this group which led to the fear of being called “mental” and therefore patients’ mistrust led to lack of disclosing such pertinent hallucinations. But Sacks assured these patients they weren’t insane and educated their phsyicians on this fact. There was a perfectly natural reason why hallucinations occur.
Sacks said we see with our brain which we know as imagination. This is “normal”, we have lived with it our whole life and we understand it intimately. But he speaks of hallucinations which mimics perceptions not of our creation, nor control, and that they come in visual or vocal/musical form.
These manifestations the mainstream fear and judge actually heighten our awareness of a bigger picture. For example, hallucinations helps the scientific world explain how the mind works.
* * *
Sacks was interested in the adaptability of the human spirit in spite of living with such a biological chance, which is what many medical conditions are. He doesn’t speak of biological factors and scientific jargon, he humanizes his patients so that others may see what he sees or rather, what the patient sees.
This natural empathy wasn’t and can’t be taught. He speaks of his patients with warmth and wisdom. This does not say some of his patients weren’t angered by his portrayal of them, something he openly admitted. But for the most part he did his best to offer a window and chipped away at barriers of misunderstanding.
Sacks often said the patient might know more about their condition than those treating them and insisted that symptoms are often not what they seem.
He believed listening was almost a more affective tool than the knowledge itself.
He pulled a transparent veil over a population that was (and still is) unheard, hidden, an inconvenience and even vilified for political gain.
Facts are measurable but humans are not. As a scientist Sacks tried to live a life of detachment in order to remain scientifically objective, but he also spent his life prevailing over detachment with his patients because he saw it as a necessary means to true understanding.
I've read most of Oliver Sacks' books and speeches and sense a deep kinship. I could go on about all of Sacks’ case studies and his span of knowledge and I’ll most likely write about him often. But the takeaway is he had both medical knowledge and empathy.
This is rare.
What is rare is tenderness offered to the sick, and while overall there are many good doctors, I’ve had too many intimate experiences with this lack of tenderness.
My condition was highly difficult to diagnose, a condition that at the time was thought to affect one in a million. So while I accepted the difficulty of diagnosing a disease not known to most of the world’s doctors, it was the lack of empathy that was most difficult.
Like I said in my last post, I had some of the best doctors do their worst work on me and in almost every case they disregarded my emotions sparked by their terrible care and offered a pill to deal with me.
Last summer I met with an international scientist and a fellow patient from another country. The conversation turned into ridicule of his country’s patients who cry when speaking in front of legislators or biotech firms.
I was initially stunned. There is nothing wrong with crying and no person, not even a spouse or family, could truly understand the difficult road of living with a (rare) progressive disease. But then I realized 1) it’s their culture that drives this perception and 2) scientists are known for being rigid and matter of fact. It is why they are scientists and good at it. Scientists deal with facts and information. It doesn’t say they don’t care, but they aren’t always wired for human sensitivity. I’ve had many patients come to me offended by what a scientist said to them but in knowing that scentist, I knew it wasn’t malice but merely a personality difference.
Empathy and emotional intelligence cannot be taught. You can’t intellectualize or learn emotional intelligence. I’ve seen people do it and it can come off forced and awkward. Some have it and Sacks was one of them. He didn’t speak at patients, he lived beside them - in his work and in his thoughts. He was a humane chronicler of neurological disorders. He was a physician and a story-teller. He is one of my heroes because he is so rare and I deeply wished I could have met him. It would have been a great privilege to illustrate some of his case studies. I feel it’s something I could understand.
We are all mere feathers in the wind. It would be wonderful if we carried each other in this same fashion more often than not.
This 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.Read More
My condition and move to California has sparked me to live by a “Why not?” philosophy. As I wrote in Overcome, an article in my former KoreAM column about my skydiving experience, despite my immense fear of heights I felt I should try it because when you’ve lost everything, in a sense, there’s really nothing else to lose. All my other fears and obstacles seem to pale in comparison. I try to be open to anything at least once and because of this kind of thinking I have tried so many new things my former self would never dream of.Read More