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…
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.
“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 Butterfly
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.
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.
“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
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.
“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.
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.
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.
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.”
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.
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.
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.
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.
Big cooking became a part of my California identity and I loved cooking for friends and family. Childhood holidays are a big part of my memory bank. My mother and grandmother were always in the kitchen whipping up far too much food for visitors would stop by throughout the holidays.
I knew this is what I wanted for my future home.
Today, I don’t cook with the same intensity. I can’t. Through the years, Jason’s role as sous chef has grown and even though cooking is not innate nor his passion, he, per usual, assists my passions. But there is a point where I can no longer say it’s me that is behind the cooking and while cooking isn’t just the physical task but also understanding of recipes, proportions, organization, quality control and technique, there will be a time in the very near future when I will hang my apron for good...I can feel it coming to an end.
"My art was originally meant to spread awareness for GNEM but I’ve realized the viewer may see his or her own life in them, which is really nice,” she said. “I’ve had many strangers from around the world confess their own struggles and share how one of my drawings helped them to either see it differently or feel heard.”
The GNEM world looks very different than when I began advocacy in 2007. I stumbled upon a scene in its infancy and though I met a few patients in 2007, something I was told would never happen, it often felt lonely. There weren’t as many GNEM representatives in the US at the time (I only knew of ARM) and handful of scientists/clinicians working on GNEM. I always believed global patient advocacy was the only way to treatment/cure, but in the beginning it was difficult to get patients to share their story. But today the patient advocacy landscape looks so much different, louder and impressive and I’m so proud of all of them. Patient advocacy while navigating the channels of constant loss and struggle is very taxing and draining.
"It has been one of the greatest and most difficult years of my life. I learned everything is temporary. Moments. Feelings. People. Flowers. I learned love is about giving- everything- and letting it hurt. I learned vulnerability is always the right choice because it is easy to be cold in a world that makes it so very difficult to remain soft. I learned all things come in twos: life and death, pain and joy, sugar and salt, me and you. It is the balance of the universe. It has been the year of hurting so bad but living so good, making friends out of strangers, making strangers out of friends. We must learn to focus on warm energy, always. Soak our limbs in it and become better lovers to the world, for if we can't learn to be kinder to each other how will we ever learn to be kinder to the most desperate parts of ourselves." — Rupi Kaur
I love window light and its endless patterns. They are so simple, yet so graphic and descriptive. They tell a story of their travels; where they have been, where they are going.
Window light seeping in between blinds always makes me think of solitude, loneliness and contemplation. It makes me think of the days you don’t want to get out of bed, when you would rather let the strips of light lay on your body and make it bend to you rather than bending to life. Enough warm light to caress your face, as if those strips bring you some connection to the outside world, but hidden enough to stay disconnected so no one can see you. We all have bad days. Today, tomorrow or the future sometimes taunts us. The things we are struggling with whether it be a disease, disability, depression, death, loss, relationships or life’s obstacles that seem to hold us down with little hope. In those moments I turn my head towards the warm ray bans and murmur to myself, 'Better days are ahead'."
've been reading a lot of Charles Bukowski lately. He's one of my favorites. I think we are all thinking and wondering lately; some more loudly, some more silently, but these contemplations are nothing new. Humankind has been experiencing, contemplating and fighting the same since the beginning. We are led by our fears and ego, our emotions, like fear, are easily manipulated and controlled. If only we could see each other as the same clones and instead connect through our mass similarities like loneliness, fear, suffering, burden, love and pain, perhaps we would stop championing what is different between us, carrying them around like flags of declaration, and instead swell on what connects us.
“We're all going to die, all of us, what a circus! That alone should make us love each other but it doesn't. We are terrorized and flattened by trivialities, we are eaten up by nothing.”
The Last Bookstore is the largest used and new book store in California. Take a look at this Short portrait documentary on how this amazing space came to be.
The founder and owner Josh Spencer was hit by a car and paralyzed. At the time he was building his online book store. Despite the accident, chair and depression he didn't let it stop him from going to garage sales and library sales to pick up inventory. Today his little book dream and great love for books has grown to 22,000 sq feet of books, records, art and even art studios all in the old Crocker National Bank that helped set up Los Angeles' economy in 1914. It's a neighborhood treasure.
We started our short road trip near Mojave desert area to visit "The Cat House". The Cat House is a non-profit breeding, conservation and research facility and home to over 70 of the world's most endangered felines such as the Amur Leopard where only 30 are left in wild East Asia. I'd recommend not going in the summer (because it's hot) and attend their biannual twilight tour where they bring out more of their cats that are hidden in their compound.
Behind The Cat House is an old abandoned mining town.
Then we journeyed down to Vazquez Rocks.
Vasquez Rocks are formations sculpted by 25 million years of earthquake activity along the Elkhorn fault, an offshoot of the San Andreas Fault. Erosion gradually stripped away soil from around the rocks, leaving these ancient creations.
Adoptees universally are told their biological parents adored them so much that they offered them up to a better life. It is a nice theory, one that has no trace of ugliness,” she writes.
I'm deeply impressed by Corina’s writing. It doesn't aim to be above you or smarter than you. It aims to share an intimate space in time. For a moment. A rarity today.
“I discovered that faded, typewritten assessment years after being adopted by an attorney and a real estate agent in Cedar Rapids, Iowa, when I was 2. As a teenager, I would take the papers from my mother's desk drawer without asking and pore over them when the house was quiet.”