Patients

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.

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I Learned...

"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

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Better Days Ahead

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'."

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We are

'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.”

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Summer la la land

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. 

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LA Times 'Abandoned as a baby, she gets a priceless gift'

“I had been housed, but did not have a home.

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.”

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Welcome to My New Website!

Welcome! Thank you for visiting. After years of taking a break, I'm returning to blogging land. 

Every post prior to this post are old archived blog posts from my greengreengrass.typepad.com.

I will be shutting down my old blog and will be blogging on here from now on :).

If you want to follow my new blog and receive notifications of new posts via email then:

Cheers!

Reminder

I try to remind myself that all we have is this moment. It helps me to keep living, keep planning, keep moving, keep believing, keep feeling.

I feel like I need to get on here more and share how things have progressed, how I'm feeling.

But like I mentioned in previous posts, I think I have been avoiding talking about it; in art and writing. Rather, I'm doing my best to live my life, live in the moment and take it for what it is.

But one cannot escape the looming shadow of reality.

I hope everyone is doing well out there. xo

Untitled

I like the desert. There is a familiarity there. It resembles many of my recurring dreams that began as a child; an abandoned land that I would fill up with my mind…

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Third Annual Bike for Kam

Well, it's that time again.  Time for Bike for Kam.  If you have been following me the last couple years, you know the drill.

Three years ago my friends and I started Bike for Kam as a means to spread awareness and raise some funds for the non profit organization, ARM, that I work very closely with. ARM/HRG is the nonprofit working on HIBM research, the condition I have.

The first two years we rode from San Francisco to Los Angeles in seven days. Between those two years we collectively fundraised over $50K using social media.  Not too shabby for having no project funding and a little team of riders with me running its daily operations. This year we decided to take a break from the epic cross country rides and go local. SoCal, that is. Seven days is alot of time to annually take off. We always have people say they want to ride with us but can't because of work. So this year it's 150 miles, LA to San Diego in two days.  This weekend in fact.

This year I'll be joining my old and soon to be new friends on the road and as usual I will do a daily blog post recalling the day of biking.

With that, visit our website, donate if you are able and then pass our project to all your friends and family.  www.bikeforkam.com

Follow us on facebook, too! www.facebook.com/BikeforKam

Playing Art Catch-Up

Hello?  Is anyone still out there?  I highly doubt it.  What am I averaging, a couple posts a year now?

 I'm hardly followable.  I get it. I barely blog now.  I know, terrible. I'm not sure why.

I guess I go in swings where sometimes I want to write or draw it out and other times I get myself into distractions and focus on living and enjoying life rather than dispensing my emotions or running, errrr, rolling to publicly catalogue it.  

During those times, I barely let anyone know what I am doing.  It's kind of like me not wanting to share everything about myself.  I suppose, I want some pieces to hold that I only know about.  I need that, too. I can't be mentally in HIBM 24/7, even though there is no real way to take a break from it, distractions or not.

If I'm asked about my HIBM I certainly don't mind talking about it. In fact, I'm glad if they do. I'm glad if they feel brave enough, or even better, unphased with asking me what is obviously on their mind. But if no one asks then I normally don't want to bother people and I spare them the details. With that, I guess I haven't been in the blogging or drawing mood. I go in waves.  

Drawing allows me to shed what I'm feeling without burdening others.  

There is a sense of calmness and working through the journey of emotions when I journal them through drawings and I need to be better at making time for them.  If I do keep progressing, which will most definitely happen if treatment doesn't draw nearer, I too would be interested in seeing the timeline of progression and moods through art. But I'm still hoping I won't see that day.

The thing is, I only share my drawings and my life because I want to motivate results and action.   I don't want to be just an "inspiration" because most inspirations are momentary and then forgotten about.

What am I supposed to do with that?  

It's not tangible. It's not something I can apply to the here and now, so I have very little reaction to "you're an inspiration".  True inspiration motivates action.  I guess I want action. I want passerbys to get involved.

I share my art for this reason and not to be watched from the sidelines as I deteriorate, hearing the words, "your art is so inspiring or you're so inspiring".  It's not right for me to feel this way but sometimes I get upset about this and I become discouraged and sometimes stop drawing or blogging.  When I feel like it doesn't matter, I withdraw. It's like a dagger to my heart. I open myself up not to be noticed but to perpetuate action.  

I find myself thinking that I don't want to hear how sorry everyone is ten years down the road when I'm already deteriorated, especially when something could have been done to prevent me from getting that far. I guess, I'm not interested in seeing sad faces ten years down the road when something could have been done.

These thoughts are unfair but honest.  I know things don't work out like this, it's no ones fault or duty, and patience is needed but time is always weighing on my weakening shoulders. Literally.  

With that, I realize I haven't posted art on here in a whileIn fact, I have only completed a couple new drawings in the past 6 months. I need to get better.  I have, however, been in four art shows that I never blogged about on here. For now I'll upload some of my newer drawings but you can always view them on my Facebook page

I'll get back to drawing this summer.

Through Humor...

"Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it." 

Keep laughing. Humor and creativity are the only things that keep me here.

Happy New Year!

"For last year's words belong to last year's language and next year's words await another voice." - T.S. Eliot

Happy New Year!!