Ponytale

This piece was inspired by a simple moment of tying my hair into a ponytail. 

My hair has been short for the last few years but recently I have been growing it out. My shoulders, arms, hands and fingers are significantly weaker than they were a year ago. This makes tasks like washing hair, blow drying and doing something as simple as tying a ponytail much more difficult.

Last month I tied my hair for the first time in years and it frustratingly took five minutes to achieve. The whole time I thought, "This has never been hard in the past. Not this, too". 

In this simple moment it is, yet again, glaringly obvious of what has left and what is leaving. It is the moments that make up a story.

As a child I remember bunching my hair, wrapping a rubber band around and looping it through effortlessly. Prior to learning, someone else had to do this for me. Usually my mother.

As a teen and as a young adult never did I give this act a second thought. It was effortless. It took a second to accomplish. 

Untitled

This one mirrors the 1949 June Vogue cover by Clifford Coffin.

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.  

Most people see a bottomless infinity, desolation and life that is stunted. But I see it as a place not known. The sun pulsating on my skin feels good and for awhile it allows me to forget the disconnect my body and muscles experience. I shut off my phone and I am away from everything.

clifford-coffin-vogue-june-1949.jpg

I like the solitude and meeting of unusual and unexpected characters and sites. If you don't expect it, you appreciate it more. The desert is a clean slate devoid of noise, commercialism, TV, social media and nonsense, and I am alone and able to comb through a land full of interesting pockets. 

As she moves away from you, diminishing in size, it reveals the journey toward something. Progression in a land that feels lost, she has lost something and can't seem to find it.

I Am a KoreAm Journal Columnist

Hello out there!

I don't expect anyone to be still following me.  I won't even waste time making up lies on how I haven't had time to keep up with a blog. Let's face it, I'm terrible at this.

The truth is.  I'm being lazy about it.  I write notes and thoughts into my phone but never get around to translating it to my blog.  

I don't always have time to formally write down my thoughts and when I do have time I guess sometimes I don't want to use my free time dragging up a subject that is difficult.  

It (HIBM) already has enough of my life and I sometimes I resent giving it a bigger spotlight or platform than it deserves. I know why I need to share and I don't mind doing so but sometimes I just want to be "Kam". No story to be told, just another boring, nameless body in the crowd. 

I limit my sharing. I go in spurts. I wish I was  better at being full time at this but to be frank most of the time I just want to be off living my life to the fullest and not lamenting over this thing that invades my body.  And, I have been doing just that. This past year and half I have put my attention to other things. Like living new adventures only I know about. I have been well. I have the occassional emotional setback but for the most part I feel satisfied. I feel challenged. I feel alive. I'm ok.

Recently, KoreAm Journal gave me my own column.  September they launched my first column LIVING AGAINST FEAR 

Feel free to follow me there.  

"I tend to follow the lines of Twain’s “Write what you know.” And what you will find in my column is an array of stories about my life that will hopefully resonate with many of you—the things that sometimes hurt us, challenge us, frighten us, make us laugh, make us brave or weak and make us cry."

I figure if I'm slacking on my blog at least you can get an occasional entry through my column. Keep following me. I'm always somewhere on the net whether it be my tumblr, instagram (my travels), facebook.

So feel free to stalk me on those forums ;).

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.