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!!

Live

The time to live life is always now.

Access Paratransit

Waiting for my Access para-transit ride in the rain. Per usual they are 45 minutes late. When they arrived there were already two passengers in the van and we still have to pick up another passenger. All three get dropped off before me, which means I'm looking at 3 hour ride just to reach a destination that is only 15-20 minutes away.

God, how I miss my independence and driving. I miss it with every single breath.

Miss You

I miss my legs so much. I've been doing good lately. Really good, actually. But the loss always rears its ugly head during random moments. I miss the person I was when I had them but I don't regret the person I've become because of it. Despite it. But I dislike the feeling of dying limbs, an experience I never thought I would have to know.

What Happened to You?

Some days the stares feel like daggers and I don't feel like being polite or focusing on making them feel at ease because all I want is to be left alone. To blend in. To not stick out. To be invisible. To not be asked, "What happened to you?" from strangers' stares and inquiry after a two second encounter. I don't want to be seen. I don't want people to watch me deteriorate.

Reminder

One of the most difficult things about being disabled, especially when it's progressive, is being forced to rely on others. I hate that part so much. I'm waiting for my helper who is 3 hours late. I need to run errands for my first art show and it takes alot of back and forth to pick up materials.

With every daily minute step there is an immense amount of planning involved. But all I really want to do is just pick up and go and not be tied to anyone.

There's alot of waiting and asking.

I don't mind if people want to help me but it's hard waiting on others or hoping that they will be reliable. Or if it's a particularly busy week where I need o do multiple things, I can't. I'm forced to wait for my husband or employ help. I'm constantly waiting and it's those moments that remind me that I'm disabled. I'm progressing. And increasingly at the mercy of others.

Speak Art

It's been a month and a half since I last posted and I know, I keep saying the same thing. 

"I'm sorry I haven't been on here much."

I haven't REALLY blogged in quite some time and yet there is always so much to share.  

This summer has been busy and full of changes including new challenges. But at the very least I am still doing some art when I can.  Not as often as I would like, but some.  So if you don't see me on my blog check my Facebook art page to see if I have posted anything new.

Lately, with the limited time I have, I would rather use that time do an illustration than blog/write.  I feel like art is a more personal way for me to communicate. Expressing thoughts through a drawing or an image is a source of communication that cannot be duplicated. I like being able to speak through art. Less telling and more sharing.  

Oddly, I feel more anonymous when I draw. I don't feel like everyone sees everything at once.  A drawing is open for interpretation and I have found, from random comments or messages left by strangers, that they interpret the art and see it through their own eyes and their own life situation, which is interesting and unplanned. I have found it to be an ideal way to share because it's not just about me. Many of us are REALLY is in the same pool in one way or another.

Like my Oneiros and I  illustration.  A passerby emailed me and specifically pointed this one out as something they identified with. Oneiros (the monster lurking in the trees) is my HIBM monster that follows me. It's a part of me. A part I don't want nor invited nor created but a part of me, nonetheless.

It's a part that I have no control over. A part that is both good and bad which creates a grey shaded area of emotions.  You can't be completely mad over something that has brought about such perspective but perspective is sometimes painful. There is no way around it. It's a process of working with your little monster. And so I've personified him in my head, an entity that also has real emotions, hurt and pain.  So here we are. We have a relationship.  

"He" doesn't know what he does, he just knows he needs to be there. That is what he was designed for. He grieves and he ponders over my constant desire to escape him.

He is like a child. Sometimes he does wonderful things for me and other times I want to be left alone. I'm waiting for him to leave but he is a constant reminder of my past, present and future.

Sometimes he makes me cry, while simultaneously making me grow, whether I want it or not.   I have a whole series of drawings to communicate this relationship with Oneiros. I need to post them.

I really appreciated this passerby's comment because I never anticipated that it could touch someone else in a similar, yet unique and altogether different form.  This passerby said they were intrigued with the "compassion in Oneiros' face, his body language is timid, simple and almost without agenda."  The part of this person, that they don't want, is the mental illness they experience.  It is what lurks, follows and makes them feel less than in a society of fabricated sameness.  

They shared that they have always viewed this part of them as evil, intentional and overpowering, making them feel like an odd entity in society.  Only a couple people know of this secret pain in their life.  

They shared some other really personal thoughts but it's not my place to share those here but the drawing made them look at their mental illness in a different light.  

"What if 'it' is not evil; with no personal agenda to destroy me; maybe I could make peace with it.  After all, 'he' is part of who I am," they said.

I emailed with this person a few times and I said I was sorry that they felt this way but that everyone has a story and no one is without "illness" so, please, don't be ashamed.  

Our "illnesses", disabilities or struggles manifest in different forms; physical, mental, arrogance, selfishness, memories that control us making us puppets of the past. The list goes on.  

Things that we caused, things we had no control over - they affect us and create an inner dialogue that can make us feel alone.  If we spent more time accepting, or better yet, learning about people's darkest plights we would build understanding.  

Perhaps we wouldn't have to feel so lonely, secretive, ashamed and at odds with ourself because everyone struggles. The moment you are able to understand this, is the moment compassion is born into your heart, for yourself and for others.  And, not the synthetic kind. The kind that can only be taught through experience.

Most of us avoid ourselves and some have no choice but to face it.  When you're faced with your own self it is a constant relationship and journey of learning how to incorporate it without letting it rule your life. It's not a puzzle to be completed overnight, nor is there an end. But being on the journey of resolution is better than nothing, I guess.

I've received several emails like hers and I'm glad that others can have their own personal interpretation and see themselves in my drawings.  I think this is the one message I wanted to share when I started drawing. It's not just about my inanimate legs and body but about the struggles that we all have but no one wants to talk about.

Here are a couple of other recent drawings.

The Gift (Gift Giver's Unknown)

I'm adopted.  My condition is genetic. I know nothing about my biological parents; the bodies who passed this condition to me.  

They are/were carriers but did not physically express HIBM symptoms, which means they are perfectly healthy and free of the remains that HIBM leaves behind.

This physical expression was passed onto me and I am their HIBM product.  

Because of HIBM I have become more and more curious about my genetic and medical history as well as the faces I've never seen, yet each morning reflect into my bathroom mirror.  

I've been doing more art about this part of my past. A past as an orphan and recurring childhood dreams that I used to have.

I think this is also another part of my life that is important to share, not because I want to be labeled as an adoptee, orphan or a disabled orphan but because I know this is something that affects many people (adoptees). Many carry this sense of abandonment much heavier than others.  I am fortunate to have handled it with such confidence and understanding and to have landed in a decent space. I'm grateful that I was adopted, given a home and opportunities but not everyone was/is that lucky or able to deal with the emotions from it. They carry it with them their entire life.

Another 4AM Ramble, Frida Kahlo and Some New Art

It's 4am and I can't sleep. Insomnia disappeared for awhile but the last few months it's been climbing back.

I'm extremely uncomfortable at night. My upper limbs feel heavy. My shoulders feel like they just hang — like heavy weights without life. It feels like my arms, hands and fingers have been getting weaker.  My joint pain has increased. This is not an HIBM symptom. Some patient's experience it, some don't. I do. Alot. I'm in constant pain in that area. I try not to think about it but it's hard when your body is in constant reminder mode.

I guess we take for granted the seamless effort our body goes through. A "normal" body is constantly working in unified collaboration for one single move. To them it's effortless.

So I'm making use of the middle of the night, or rather morning, by doodling out future sketches while watching Ratatouille.

My little Pippi is laying at my feet, looking up at me and wondering when I'm going to sleep so she can sleep.

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"I paint my own reality. The only thing I know is that I paint because I need to, and I paint whatever passes through my head without any other consideration."
-Frida Kahlo

Today is Frida Kahlo's birthday.  Kahlo was an early 20th century Mexican “Surrealist” painter. She was a child among the Mexican Revolution and best known for her autobiographical self-portraits.  

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. I've often wondered what my art station set-up would like if this happens to me in the future. Although, her situation didn’t cause weakness in her arms and hands like mine does.

I try not to think about it (future) but from time to time it needles its way in.  

Kahlo’s trolley accident when she was 18 was not her first brush with immobility. At age 6 she contracted polio. She was bedridden for nearly nine months and eventually recovered with only a limp to remind her of her childhood struggle. To aid her recovery her father encouraged her to swim, play soccer and even wrestle — highly unusual for a girl at the time.

Kahlo painted from real experiences and much of her work are suggestions of the chronic pain since her accident. In her paintings she depicted her physical ailments, miscarriages, and identity struggles. 

Despite her pain-filled paintings she was feisty, direct and tenacious with a zest for life. She was active and loud in the political, intellectual, literary and artistic movement. But by 1950 her health issues were all-consuming.

Kahlo was not your typical woman, especially for her time. She is often regarded by feminists as an inspiration and fellow feminist, which is interesting since Frida didn't regard herself as one. I think Frida would hate that feminists use her and claim her as their own since she was adamant in belonging to no label. She was beyond labels or trend.

Kahlo also rejected being labeled a surrealist painter.

“They thought I was a Surrealist, but I wasn’t. I never painted dreams. I painted my own reality.”

Even though Kahlo was an artist, political activist and intellectual she loathed and had no room for elitism and high society. She remained true to her roots and skeptical of those who reveled in artistic and intellectual elitism for the sake of being better than others.

“I would rather sit on the floor in the market of Toluca and sell tortillas, than have anything to do with those ‘artistic’ bitches of Paris.”

To categorize Kahlo into a group almost devalues who she was. She merely painted what she knew and experienced. And what she knew was herself. She valued her life and took her work seriously even when museums didn't. She put herself on canvas.

It’s strange because I've held this same philosophy throughout my life. As I’m writing this I realize I hold many similarities. I don’t like to be categorized. While I’m an adoptee, former orphan, artist, disabled, Korean, American etc., I’m often weary of any such label since I’m many things and a sum of many experiences. To me I'm just Kam.

Kahlo's self-confidence, in spite of her ailments, led her to do and be who she wanted. She was independent and chose not to fall into the trappings of tradition. She regarded herself a sexually liberated woman and openly bi-sexual who occasionally dressed in men's clothing. Despite her physical frailty, Kahlo had many love affairs and was no friend to monogamy.

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In 1953 Kahlo received her first solo exhibition in Mexico. Prior she had exhibited in United States and Europe. At the time she was bedridden but that didn’t stop her from missing her own opening night. Arriving by ambulance, Kahlo interacted with her art show attendees from her four-poster bed set up in the middle of the gallery.

A few months later her right leg was amputated to stop the spread of gangrene. She returned to the hospital several times afterwards but stayed politically and artistically active up until her death at age 47 in the “Blue House” she was born in. Officially it was reported her death was due to pulmonary embolism but many suspected suicide, including her nurse who counted her painkillers. Kahlo had been suicidal throughout her life.

In her last diary post she wrote, "I hope the exit is joyful — and I hope never to return"

One would think that a statement like that derives from a person who didn't truly enjoy life but I think she was just being honest. I hate when society romanticizes artists as "mad", "tragic" and "tortured" because aren't we all? The only difference is artists have the ability to leave a visual trail. I myself hate being described as a sad tragic artist. It's insulting. Her pain was real and though she did so much with her life, I think she understood and accepted her own mortality and place in life.

We are important, but not at the same time. I think once we are able to accept that and the reality of mortality, we can start to grow and not take ourselves so seriously. We can live beyond the confines of tradition and rules set for us.

We often think people who express sadness or real moments of pain must always be that way but you can simultaneously represent both sadness and employ a relentless pursuit of life. I can express how my condition feels and still live my life to the fullest with joy and passion.

What is real is real.  What is pain is pain.  Multiple emotions can exist at the same time.  

I don't post art so people can feel bad or feel sorry for me. I do it because I know alot of people are going through the same thing, even if it is in a different form. In the end we are all seeking connection and understanding.

Frida was recently exhibited at LACMA and I of course wanted to see her work in person.

Like most artists, she was not famed until years after her death.

I had always been a big fan of Frida Khalo long before my condition even started. I liked that she represented herself as almost ugly and painted her own past, present and future.  

In high school I would sit in the library and read about her during lunch and appreciated the honesty depicted through her images.

Now, that I have a progressive condition, I still like her but look at her work much differently. When I started illustrating about my condition  a couple years ago, I hadn't even thought of Kahlo. But she's recently been on my mind.

Kahlo had many fans visiting her work at the LACMA exhibit. I had to traverse through the crowd of spectators who repeatedly ran into me right after artfully theorizing and dissecting her paintings on the wall.

"Oh, I didn't see you," they would say annoyingly as they ignorantly regarded me as someone in their way. It was ironic since they were just intellectually salivating over a disabled artist's collection. I think many people like art for the appearances of liking art but completely miss the message. This both applies to spectators and fine artists.

I sat there quietly rolling through the artist's emotions and it felt weird to add "meaning" to it. It felt weird to look upon another's emotions and pain; feelings that you are well aware of because of your own intimate experience. Her work was social and political as well her own personal agony.

"Disability" is a person and not just a condition or disease. Understand the person behind it and only then can you understand the disability. 

"I paint self-portraits because I am so often alone, because I am the person I know best." -Frida

Here are a couple new illustrations below. I suppose art is the healthiest way I can distract myself.  I'm very lucky to be able to use drawing as a tool to express myself and the experience.  I seem to use it to make sense of things to myself first because I understand things better visually. And second, to make sure I am clearly communicating it to others.  

Sometimes I think the art circle is meant to be above someone, a means to hide cryptic deep messages into an image that only an intellectual, an artist or the educated can get. But I think art should be the opposite. It's not meant to be above but with. Art is meant to communicate and make the viewer feel like they are a part of something.

What good does it do if no one can understand what you are trying to say?  

When something challenges you like going through cancer, a death, a horrible disease — if you can handle it with dignity, humor, expression and growth, no matter what the outcome at least you proceeded gracefully and learned.

I guess drawing is how I can make sense of it all.  Thanks for following my work.  I wish I could complete five new drawings a day. I have so many I need to finish. Time to sleep.

Bike for Kam Final Words and Video

With the mere use of social media, facebook and my friends and community, we managed to raise more than $32,000 for HIBM medical research.  That's pretty great! Very thankful to everyone who was involved!

Below is the final 2012 compilation video I put together.

After they crossed the finish line they gave me their mobile snapshots and video clips they managed to capture along the way. I edited it together to share their experience.  This has become a Bike for Kam tradition.  I like to do them, not only for our supporters so they can experience what the guys did on the road, but also for the guys. Whenever they feel they are stuck in cubicles, longing for freedom and adventure, they can watch their videos and revisit the adventures they lived.

Read Bike for Kam's final words and testimonies here: FINAL WORDS

More Art

Like I said, I've been terrible at updating my blog so I'm not sure which one of my new drawings hasn't been uploaded here. You can always check or subscribe to my Facebook Illustration Page to receive my latest drawings.  I usually upload them there. But here are a couple.

The Essence Remains

The Essence Remains

Can't Erase You

Can't Erase You

That Muybridge Stride.

Inspired by Eadweard Muybridge and his photographic studies of motion. Big fan of his work. A 19th century British photographer, Muybridge accidentally created the world's first motion picture by setting up multiple cameras to study movement in animals and people. He captured what the human eye could not distinguish as separate movement, creating the first stop motion and conveying the beauty of movement itself. As I slowly have lost movement over the years, I often mentally break down people's movements and strides just so I can recall what it used to feel like.

Wheelchair Adventures and Stranger Danger

This will be a quick post.  I have so many of these stories but this one just happened so I should share. 

I was walking my dog when suddenly this creepy man comes up to me trying to strike up a conversation.  I could tell I should be skeptical of him so I did my best to not acknowledge his attempts and pretend like I didn't hear him.

But he kept following me, asking me questions like, "What are you doing today? Do you usually walk this path daily? Are you going home?" 

I felt cornered and was doing my best to assess my surroundings and roll around him.  My very friendly Pippi - whom I usually adore her loving, trusting heart - wasn't helping the situation at all as she tried to give her usual unconditional love to this stranger. I managed to wheel around him and ignore his comments as he kept lingering behind me. I saw a woman walking her dog so I rolled to her and started to play with her dog. She was a young, shy asian girl who seemed confused by me (because I was in a wheelchair and approaching her) but I stayed with her until the guy disappeared.

I didn't take the normal route home just to make sure he wasn't following me. As I crossed the street that was armed with a crosswalk and stop sign, a car didn't feel like stopping while I was crossing.

He suddenly pressed his brakes yelling, "...well, you shouldn't be in a wheelchair!".  

In which I responded with, "Well, you shouldn't be an asshole." and kept rolling.

I felt perfectly safe to be a sass in that situation because there was an army of people around me.  

There are so many stories like that guy telling me that I shouldn't be in a chair.  Don't be a jerk.

Being in a chair, or just disabled, creates a lot of vulnerability.  It's a little moreso if you're a female. If I happen to be alone and I feel awkward about my environment, I'm usually hyper aware. If I'm alone I'm careful and think ahead of how I would deal with a situation if it became dangerous.  

Fear won't keep me from doing things because it might be dangerous. I don't not go out because of fear because I don't want to be a crazy person about it, but I do like to be aware and think ahead.  Well, I don't like to be, I just don't have the luxury to be any other way.