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.
“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
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.
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.”