Grandma = Cooking Up Love

I'm the one to the left with hands behind my head.

I'm the one to the left with hands behind my head.

I know, this is supposed to be a blog about disability and my thoughts on it, and yet there's always all these food pictures on here. How does that relate to disability? I know, right?

Well, it does, because it has to do with the person living out the disability and the disability itself.

I'm in the middle of a move. Oh, yes, I didn't mention that. I'm moving back to LA in a few days.

As I have been packing I've come across those tucked away items that only come to light during a move. I have found alot of grandma pictures. She died in 2007. That was hard.  My family was at her bedside 3 days before Christmas and I was boarding the plane trying to race home so I could say my goodbyes, too. I missed her passing by a few hours, I was still in the air. 

Like many grandmas are, she was the family glue. During her funeral I got up and did a spontaneous speech about her. As I spoke I realized much of what I recalled was about food and my grandma's love for her "open door" policy -  as she greeted guests with welcoming arms.  She always had some kind of dessert or Entenmann's in the bread box for those "just in case" visitors.  She grew up during a time when the family didn't stray too far and many of her siblings and family lived on the same street, the same corner or within a mile radius.  

Holidays were always a big deal and her Thanksgiving dinners are something I really miss. She cooked everything. Every year she would make as many as nine different pies - all homemade down to the crust. As she got older and her body more frail, she would start prepping for those holiday meals weeks and sometimes months prior. Only being able to stand for shorter periods, she would make the squash, cranberries, etc., earlier and freeze it. This would cut down the number of dishes she'd have to do on the eve of the holiday.

I remember she would scoot around the kitchen in her walker and when I'm cooking, holding onto something I love but refuse to compromise quality, I experience what I saw in her.

My grandma didn't like to sacrifice a dish so  she figured out ways to outsmart her body. I myself have adopted this tactic I sometimes cook big batches and freeze it. Or on holidays, like the Thanksgiving day dinner tradition that I inherited from her, I usually cook over an entire week, doing a little here and a little there. It cuts down the stress on my body as it progresses and can't handle as much.

This past thanksgiving I even made two Thanksgiving dinners. I had already promised to help my upstair neighbors/friend's thanksgiving. We had agreed to do it together since she is the sibling of one of my best friend's family from LA. Their parents are some of the most loving and amazing folks I've met. True big latino family with an inclusive-like vibe. Reminded me of my grandma's style I grew up with. 

My suddenly-visiting-brother doesn't like to share his holidays and would only come up from SoCal if I made a separate Thanksgiving for him so I cooked two Thanksgiving dinners. Don't mind if I do.

As I spoke during my grandma's funeral I recalled our disabled mock races.

Towards the end of her life, before my move to California, quite often I drove her to her doctor appointments. I was using a cane, she was using a walker.  Neither of us were in good condition to be helping each other but we managed. I used to joke that she was faster than I and she could out walk me any day. It's strange, at 26 years of age, to be walking behind your 80 year old grandma and realizing how similar you both look. I was getting slower and so was she.  I was young, she was old.

I guess I would have to credit her with some of my characteristics.

Sometimes I think of her while I'm cooking. I have alot of time to think while cooking.  Every step in the kitchen is a shuffle and what would take others a single second to get to the fridge, may take me 20 seconds, 20 shuffle steps.

When I was young I baked alot. While baking I would pretend like I was a cooking show host and mumble all the steps and what I was doing.  At times a Julia Child accent would creep in.

Ok, I still do this today.

"You'll never know everything about anything, especially something you love."  Julia Child

I can never explain how truly torturous it is, at times, to not be able to move like I remember, and at times this stains my mind. There are select friends that I sometimes tell this to as the emotion happens. The moments I'm really missing it, I'll share it, text it, but I'm not sure it could ever be really understood until one experiences it.

They'll listen, but then able to go about their life, hopping on their bikes, running, driving. The skies the limit for them but I'm still stuck with myself in the stillness of my body, the same before they came and I can feel my insides in deep want. 

But, it's a temporary feeling. There is an innocence that accompanies it, accompanies difficult times. It strikes a chord and echoes throughout one's memories. It brings out one's innocence and vulnerability.  

Most of us go throughout our life speaking of all the things we can do, are great at, famous for, but very few of us touch all the things we can't do, the weakest most vulnerable, most fear driven sections of ourselves.  I guess in those most delicate moments I feel like a child again, an empty slate that doesn't know everything and can't get everything they want.  

That is the greatest way to learn, to be told that you can't have everything.  

Because of this, I have found that throughout the progression I pick up on new things to do.  When I find myself no longer able to do one thing, I instinctually replace it with something else.  I just want to express myself. I want to express what I can't with my body. I like cooking because there is never an end to the learning process. There is always something to improve upon and I like that challenge. If I'm not challenged, I find myself feeling very bored.

I'm not a foodie, by any means.  I mean, sure I appreciate a good meal, but Jason laughs at me because I don't really eat what I cook. For me it's not about the food as much as it is about the process and the result that the process garners - like gathering people, laughs, intimacy, comradery.

Knowing that I am moving out of northern California, I've been receiving visitors who want to say goodbye and well, "Hello" at the same time.  A few of these have been patients that traveled to see me.  

This is Tara. I recently met her.  I believe she emailed me a few months ago and was interested in meeting another HIBM patient.

She has had HIBM for the past 20+ years, but only correctly diagnosed with HIBM a year ago. This is not uncommon. Many patients go for years without a correct diagnosis including myself. All four of her siblings also have HIBM. There are many families with children who inherited this strange HIBM gift and every time I hear of it I can't imagine what it is like for the parents to have all their children express HIBM.

Besides her siblings I believe I was the first HIBM patient she met. I invited her over and made a little pasta lunch for her and her partner, Ron. When she arrived Jason went outside to see if they needed help walking down the simultaneously short but longer than ever walk.  I was cooking in the kitchen looking out the window as she slowly proceeded under the lemon tree on a very beautiful afternoon.  

She entered the doorway along with her partner at her side. I could tell she was tired from that long walk. She took a break in the doorway and we chatted from opposite  ends of the room. I was not able to quickly walk to her and give her a midwestern hug like I would normally would do, and she was able to quickly walk to me.

One of the things with physical disability, it's hard to physically express oneself like you normally would. Sometimes I feel like I look reserved and stoic but I"m really not. HIBM does that to me in a sense. 

I immediately liked them as they came off very warm. I like warm people. With people once you get passed all the unspoken, unecessary formalities, it is the warmth that really counts.  As they rested in the door way we started setting the table with the food. 

Ron said " I bet alot of things happen around this table."  

Huh, I guess it has. I think that was one of the nicest compliments I have received.

I'm always glad to meet patients and for many I am one of the first patients they have spoken to. I remember how hard it was when I was going through the diagnosis process and being told I would never meet a patient in my life.  I'm happy to meet others because of this reason. There is no reason one should go about this all alone.

This is Yoshi and his sweet wife Akane.  They came over for dinner a few weeks ago as well.  I made them a Korean dinner spread and we had a great time catching up. It had been awhile since I last saw them.

He was the very first Asian patient I met back in 2008. I was living in Los Angeles and he in San Francisco. He was contacted by patients with HIBM (In Japan it's called, DMRV) asking him to get into contact with me. He served as a translator while both I and Japan were in the connection process.  

Upon receiving his email we drove to San Francisco to meet him and his wife back in 2008.  He has had HIBM for 20+ years as well and still walking. His brother also has HIBM.  He is 70 + years old.

In 2007-2008 I helped build and launch ARM's new branding image and it was the beginning for me in meeting a whole world that was tirelessly working on HIBM treatment. My hometown doctors told me no no one was or would ever being working on this rare condition.  

I began working probono for ARM and that is how I met the Darvish brothers' the medical doctors who have HIBM and on so many levels has had a significant role in advancing research, interest and the treatment arena that we are slowly embarking on. He's also one of the only researchers that dedicate absolute full time to the research, unpaid at that, while other labs have other projects they work on besides HIBM.  

But besides them, there are other researchers working on HIBM treatment around the world, all approaching it in slightly different ways. It's very exciting and very interesting to perceive these separate lives involved with the same subject - HIBM.

During the launch of the new ARM image, we organized a gala and I invited some of these research scientists to join. In my naivety it seemed better for everyone to work together but as I learned more about the process I realized unfortunately it doesn't always work that way. Money and name is far more important and everyone seems to hide their work.

One of the researchers I emailed and spoke with was Dr. Nishino; a young research scientist in Japan who is also working on HIBM (DMRV).  I invited him and he politely declined, but forwarded a group of Japanese patients to me. He suggested that they contact me and form a group like we had in the United States.

And that is how I met Yoshi and ultimately traveled to Japan to meet this group back in 2008.  Yoshi contacted me and cc'd Mayu, a designer and a HIBM (DMRV) patient. She was very new to this HIBM experience.  We connected right away and I felt that she was lovely. She told me the action that was happening in Japan and I was very encouraged and proud to see so many patients that were combining and forming to make a difference in their own cause.

They had questions about fundraising and general questions about running an organization.  Fundraising for health is not common in Japan. Their way is through the government and they were actively working towards being noticed by their government, collecting signatures and trying to make a difference for the general disabled community.

After 2 months of corresponding with Mayu through email I told her I was going to visit Japan to meet them all. I bought tickets and a few weeks later Jason and I were in Japan with a long list of daily meetings. I was impressed that the patient group (PADM) were active in their own destination and wanted to meet.

Many patients travel to meet the allocated scientists working on HIBM; Israel, Japan, Texas, California, but I travel to see patients. It's good for patients to know there are others going through this rarity and above all just because you are a patient, it doesn't mean you can't make a difference. In fact, I've always thought it was the patients who could make the most difference, not only in their own treatment, but perhaps for the greater whole including disability awareness.

It was a truly wonderful and busy visit.  The patients were friendly and amazing and forged new friendships through the brief travel.  I learned alot about their world and I tried to share mine as best as I could. I had a translator with me, and. In general there was definitely a language barrier, but even that was subjective. I think we understood each other on levels that most people don't understand even when they speak the same language.  I'll never forget them and Japan and I'm so happy that in their end of the world they are doing their best. That is all one can do.

I believe all the hard efforts will soon come forward in treatment form, and in years to come the future HIBM'ers may never have to write about their debilitating bodies in blog form. Perhaps in a distant space they will be running and walking again.

Stealth Kam

In May I drew this right after the "Bike for Kam" project was completed. She is "Stealth Kam", inspired from my Bike for Kam guys' late-night biking adventures, ravine sleeping, road-kill and moonlit guidance.  

Just to recap, Bike for Kam is a grassroots project I did with six of my friends. The goal was to expand awareness for my rare condition and raise funds.

I have been involved with ARM (Advancement of Research for Myopathies) since the day I met them and have worked on many projects and events with ARM as a volunteer, but this was the first fundraiser I've done entirely by myself for ARM.

ARM is a nonprofit organization that has been in motion for over ten years. Founded by two HIBM patients it has managed to raise awareness among the scientific and general community, provide grants to labs working on HIBM around the world and founded it's own research lab, HRG, in 2002 - where much of the biomaterials that were created there have been used in other labs and scientists. Their work has been important since HIBM is so rare that it garners little interest from these communities. 

The bike project's goal was to do a project that had zero project spending so 100% of proceeds could go straight to HIBM medical research. With that, we raised over $22,000 online AND through an entirely new community that never or barely knew about HIBM or ARM at that.

It was a fun project and my hope is to expand this grassroots chapter to the community and to patients in hopes that they will do their own fundraiser within their community.  As a small non profit, constantly challenged with resources and very very small volunteer base, I'm looking to help grow involvement.  It's the only way we can reach the end.

You can't do anything as well as you could without a team, and many working together towards a common goal is the ultimate beauty. It's easy to be at odds, it's more difficult to come together.

I remember the day the guys left the Golden Gate Bridge heading onwards to PCH. I returned home to a mess of a house from a weekend of 6 guys staying in my place as they prepared to embark on 500 miles. All the cooking and prepping for this weekend - was such a fun weekend together. I looove a messy house after people have visited and left. I like to look around among the messiness and know that people had fun there, even if I'm tired afterwards. It means my house is being lived in, and what good is a house if it's not constantly open to others?

It's funny I call this one "Stealth" because I'm anything but quiet when I move.

Below are pictures of all the places Little Kam saw during her ride from San Francisco to Los Angeles. She's tattered, dirty and full of secrets and dreams that she collected as she rode.  I made her to travel with my friends since I could not :).

Grab the moon and stars like balloons in the sky.

Doctors. What Do They Know?

Always be open to possibilities even when they may seem more challenging or at odds to popular thinking. This is not just for medical but for everything.

A couple weeks ago I visited a new physiatrist in hopes to get a referral for my wheelchair.  I've been using a loaner one that the company kindly gave me until I get my own.  

Back in March 2011 I wrote a post It'll be Alright sharing the arrival of the next major stage of progression, a wheelchair.  

It was suggested that I go into a standing chair and use e-motion wheels, a power-assisted wheel mounted on the frame in place of manual wheels. A sensor inside the wheel registers the propelling movement and activates the electrical motors which greatly aids my weakening arms. 

The standing frame: Since, I am in a seated position more often it's important to increase circulation as much as possible. The "don't use it, lose it" phrase is one I use alot to explain the situation. While, I myself can't stop the progression there are things one can do to maintain a little though the disease eventually wins.  While these efforts and results may seem like microscopic measurements to some, it is the world to an HIBM patient.  Every second matters and if I can hang onto any physical ability just that much longer then it's worth the effort.

For anyone sitting all day is terrible, so for a patient whose body is sort of dying it's even worse.  As soon as you sit activity in the leg muscles shuts off, calorie burning drops, enzymes that break down fat drop, insulin effectiveness drops and these are just a few.  

For a patient who has limited muscle to work with it's important to keep moving as much as possible. One needs to find a personal balance of walking, standing and sitting to safely maintain what they have. As HIBM has progressed I noticed the time span in between the need to move my leg, for example, before it cramps, bloats, feels dead and falling asleep has decreased.  For example, 3 years ago, I may have started feeling these symptoms after 2 hours of not moving my leg. Today, my legs do this every 10 minutes.  

I still don't use a wheelchair in the house. It's my way of telling HIBM, "Screw you!" I shuffle and leave my wheelchair in the car to avoid temptation of retreating to the easier path.  But, outside of the house or at work I need to employ my chair almost all the time. It's just safer.

With the standing chair I can elevate in the chair by pulling the frame to a standing position. This act alone give my limbs a break.

These little things seem small but it helps to break up the monotony of sitting and relieves the body. Who knows, these types of tricks could shave off a year and allow me to maintain my mobility for that much longer.

The e-motion wheels:  My arms, shoulders, fingers and hands have gotten weaker.  With HIBM patients upper extremity weakness is very obvious.  The fingers and hands end up not moving and have a frozen look to them and the arms cannot raise. This all happens slowly and for every patient the journey, or which limb experiences weakness first, can be very different.

My weakness began in lower extremities; hips, legs, feet, toes, etc., and now it has moved upwards to my neck, arms, shoulders, wrists, fingers and hands. This weakness is not quite as visually recognizeable compared to others, though I absolutely feel it. It's obvious when I can't open a bottle, lift a dish, grab small objects, etc., but my fingers haven't visually "froze" yet.

With that, though I am ready for a wheelchair I am not ready for a powered chair.  I could go directly to a powered wheelchair but I'm avoiding it. Just like 7 years ago when I avoided a wheelchair after my doctor tried to put me in one.  

Though, I can propel a manual chair slightly on flat ground, for the most part I don't have the shoulder strength to propel one alone. But, with these sensor assisted wheels it helps me to maintain independence by completing my rotations for me.  I push and it pushes the complete cycle for me making it easy for me to tackle any evil terrain, including carpet.  

Yes, carpet is evil. I've often day dreamed about carpet as it innocently lays there while I try to trek across it. In my mind it suddenly billows up as this evil carpet monster looming over me as it mocks me.  

So, there I gave some background of these contraptions that will significantly help me gain independence. I look for these tactics of holding onto what I can because I want to be able to function and not depend on others. At least for another day.

I walked into the physiatrist's office hoping he would be on board. I haven't really gone to a doctor in quite some time because really there isn't much they can do for me when it concerns HIBM.  Walking, or excuse me, rolling into his office brought back some eery memories but I did my best to ignore them. 

I talked to the doctor, and like all doctors I've ever met, he never heard of my condition nor could he comprehend. I could tell he's the doctor that is used to a very typical protocol.

A meets B, so I give them C. Very formulaic type of treatment. Only problem is people are not formulas.

He listened to my spiel explaining the nuances and needs and afterwards he was condescending and pandering looming his doctor badge over me.

Now, we all know it is a bear dealing with insurance companies. The trick is you need a good doctor that is willing to fight for you. There are two different types of people, those who stick with status quo "it's never been done" attitude, and those who like to break the mold and give it a try anyways. This guy was status quo.  

I was already aware that a doctor would have to send these DME (durable medical equipment) requests in several times because they will almost definitely be turned down the first time by private insurance, if not the second.  But, he didn't even want to try. He wanted me to go into a powered chair. He told me that me "sort of" propelling my own chair would not do anything for me and not save anything.  I disagreed, my way required utilizing more energy than twitching a little stick on a powered chair.

As he spoke it conjured up past memories, memories that I'm not sure I've really dealt with. The journey of finding a diagnosis.

I should probably one day document it here. I know I am not an isolated case. So many people go through this and obviously not just for my condition.

This post is not intended to pick on doctors. I am speaking of my specific journey. I've come across many doctors and prior to my move to California they were mostly all bad with terrible stories attached to them.  

For example, my physiatrist from seven years ago telling me that I needed to go into a wheelchair right away and quit college. HIBM hadn't even taken over my body fully, I was functioning and yet he read the prognosis of my alleged, at the time, diagnosis and requested me to go into a chair.  It was a good thing I refused to do anything of the like. I left his care immediately.

Another past doctor stands out in my head very clearly. A high powered, well-known leading doctor at Detroit Medical Center of Michigan.  He was very clean cut, white jacket and always at golf outings for "business" affairs.  He would treat me like a little girl, something I severely hated.  I kind of have that innocent, young kid look and I notice people automatically assume my capability levels upon meeting me. But, I'm anything but that impression. I was on a mission with no time to mess around.

They did a muscle biopsy on my leg and in the same area that a previous hospital had done it at that.  

I said, "Hmmm, I'm no doctor but would it be better to do it in a different area, or even on a limb that wasn't as progressed, like my arms?"  

They did it on my leg anyways because what do  know. 

Typically a biopsy result should be in your hands in a couple weeks. Detroit Medical Center took seven months. Seven months of me constantly going into his office only to hear they didn't have an answer yet as he ushered me out the door, patted my head and handed me a lollipop.  At the time I was in design college, a heavy heavy major in automotive design. I barely had time to sleep let alone go on these medical ventures, but he didn't mind wasting my time.  

My last visit consisted of me in his office hoping that he wouldn't be a douche again.

The last visit he came in, "I'm sorry, we will have to schedule another time, I still don't have the results."  

I started to cry. Part, because I was so sleep deprived from school and part, because this was a ridiculous situation.

He grabbed my arm and said, "Awwww, is it because you're parents are getting a divorce?"

I said, "No, it's because you're an asshole. First, why not tell me you don't have it instead of having me trek in here for an appointment. Do you know how hard it is for me to physically get here? Second, it's been seven months for something that should have taken 2 weeks".

I left his office ready to move onto another doctor.  They later called me with a concluded "diagnosis".  I found out they lost the sample and were hiding the fact.  Even later, I found out, from the Mayo Clinic, that the sample was so deteriorated that Detroit Medical Center could not have reached an accurate pathology diagnosis, which means they sort of made up a diagnosis.  Mayo Clinic also was confused why they would do the biopsy on a deteriorated limb.

Yes, I thought the same.

The stories could go on and for most all of them I was alone in my search.  I never had time to accept a diagnosis or cope with it because I was too busy on a search. When a doctor didn't tell me what I wanted to hear or I could tell they were full of it, I left and moved on. As I got good and experienced I became good at identifying bull shit and would get out as soon as possible.

So, a few weeks ago as I sat in this San Francisco Bay office listening to his condescending manner I felt like I was reliving it again, except this time I was more educated about what I had. I tried to hold back tears and in my mind debated on whether or not I should let him finish his "care" or just walk out.  

I tuned out just waiting for him to finish so I could go off and find someone that would listen and help. He wanted to put me into a powered chair and I was crying inside.  

"Didn't you just hear what I said?" I thought. "It's important not to give in too early.  Why would you want to debilitate me quicker than I need to. In the long run I'm doing more disservice to the system because I'll just be another body for the state to take care of.  Don't you get it? I'm trying to avoid this it's actually saving healthcare money." I thought.

As he finished, I nodded and left as quickly as I came. He didn't even want to try.  It brought back so many memories, the lonely times in the cold doctor offices, the time I went to Mayo Clinic on a 4 day diagnosis excursion alone and at night would cry alone in my hotel room while Golden Girls played in the background. It sometimes comes rushing back and when I can't control the inner tears, it's all obvious that those times affected me more than I realized.  

The difference this time was someone was with me. Jason.  

That day I had another doctor appointment on the other side of the clinic and as we waited I bursted out crying. Leaning forward in my silly wheelchair I put my face into my hands and cried.  "I don't want to go into a powered chair".  

I hate people who love the word "can't" and I've found alot of people do.

Doctors, what do they know?  They're groomed, knowledgeable in their craft, but it doesn't mean they know everything.  You can't measure heart.  You're instincts are good, follow them and don't take ONE answer as THE answer.  All the doctors that told me I was too rare for anyone to ever care about developing treatment for or that I would never meet a patient like myself were all terribly wrong.

Keep pushing in an educated and balanced manner.  Know your stuff and always be open to possibilities even when they may seem more challenging or at odds to what others think.  This is not just for medical but for everything.

Route 1

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Doing some touring and exploring the California coast between San Francisco and LA, and meeting really interesting characters along the way.

I'm bleeding from cuts and bruises from getting on top of this rock, but the view was worth it.  I look like I am sitting so effortlessly, but getting me up here, and even just sitting without falling, was a huge ordeal.

Passerbys were confused and then they would smile once they saw what was up. Perhaps they thought I was drunk, when really it was my silly legs and the like that don't cooperate.  104 degrees and loving it, my body feels so much better in the heat.

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The coast is inspiring and I haven't felt inspired in awhile so it comes at a great time. 

Happy 4th! I hope you're doing something crazy, wild or exploratory, and most of all feeling a little inspired today.  I can't go anywhere without it.

Pecha Kuchu. Gesundheit!

A few weeks ago I was invited to a Pecha Kuchu Presentation.

PechaKucha 20x20, Japanese term for, "chit chat", is a simple presentation format where you show 20 images, each for 20 seconds. The images forward automatically and you talk along to the images.  

This helps those who talk to much ;), keeping the presentation conscise and forward moving.

Pecha Kucha Night was devised in Tokyo in 2003 as an event for young designers to meet, network, and show their work in public.  It has turned into a massive celebration, with events happening in hundreds of cities around the world with San Francisco being the top Pecha Kucha city in the world outside Tokyo where a couple hundred spectators are usually expected to congregate. 

The theme was "Grassroots".  Huh, I think I know something about that. I decided to use my illustrations for all 20 of my slides. I was running out of time, so unfortunately I didn't get to do many of the drawings I had planned to show for it, but no one knows that besides us ;).  With my bike project just closing, and many other things that were waiting for my attention, I was working for a few days drawing till late trying to figure out what I was going to say.  

My slides pretty much consisted of me storytelling how I found out about my condition, what HIBM is, how it could be treated and the Bike for Kam project I did with my friends. I absolutely didn't feel prepared when I went up.  

The presentation was on a Monday and so I was working on it over the weekend. I remember towards the end of putting together my presentation it was becoming a little emotionally draining. I had dealt with the bike project, a month + of doing nothing but talking about HIBM, and now I had to do a presentation consisting of very telling and personal drawings. I don't mind talking about it, nor do I want people to hesitate to ask me about it, but it can get heavy at times.

As I draw, it can be a very personal moment.  I'm drawing myself and drawing out my feelings as I'm figuring them out. There have been times that I cry while I draw and I only then realize how much I share about myself. Parts of me that are still a surprise to me even after all these years.  We don't predict that disability will be a topic that we will talk about later in life; a topic that seems so foreign to you in one moment and then becomes the most intimate of topics in the next.  

I suppose the presentation went well. I was praised for my illustrations and was surprised, since I don't consider myself a "professional".  I was told I "elevated the night".  That was nice.  A nice compliment. When I started drawing myself I honestly didn't expect people would like my illustrations as much as they have.  

I have yet to draw other people in my illustrations, because the truth is I struggle with that still.  It doesn't come easy to me. I can't whip out characters quickly.  I kind of started illustrating on my own without "technical" training, so each drawing is new to me.  I've been trying to work on a thank you illustration for my friends who did the bike project, but having a hard time drawing representations of them. I want to draw each of them as boys, print it, frame it and give it to them as a gift, but I only seem to be able to draw myself and my experiences.  

When I'm drawing myself it doesn't really feel like I'm drawing.  It comes easier.  It's not "art" to me, I guess.  I'm not trying to attach meaning to a drawing, the meaning is behind and during the drawing.  It is just what it is without arbitrary depth. It just is and that's it. No need for further poetic explanation.  

I feel like I'm nine years old sitting at the table with my sneakers unable to touch the ground, so they sway back and forth to the beat of my pencil and I'm just doodling without thinking. As soon as I start thinking I ruin it.

Later, I looked at photos from the presentation and saw myself in front of a crowd in a wheelchair. It was odd. This would be my very first public presentation in a wheelchair.  Not that it matters, it's just new. I'm constantly changing and everyone gets to see it whether I want them to or not.

I ended my speech with, "Sometimes you get to choose your causes, and sometimes they choose you and it's all in how you respond."

I'll try and upload the video of me presenting after they upload it to their website.

Food for Thought

I have some dished that I need to upload that precedes these, but thought I should post something.  

Here are a couple cooking projects I gave myself.  I don't normally have time to cook during the week and so I tend to have an itch to make myself try a new dish on the weekend.  Some people eat to clear their thoughts, I need to cook to clear them.

Couple weekends ago I made Jason some Anaheim Chili, lime dredged shrimp tacos w/ cilantro slaw and fresh salsa on toasty corn tortilla. Kinda made up my own recipe for this one and it turned out awesome. I really love shrimp tacos. You don't feel so guilty afterwards. ;)

On a whim this past Sunday I decided to try making pierogies from scratch. I love Pierogies, but I'm not sure what made me take on the task.  

I always think, "Oh, this will be easy" but the projects always end up more nvolved than intended.  It actually wasn't difficult to make, just time consuming and alot of steps for a Sunday night.  But, nevertheless, I was on a mission.  

After grabbing some ingredients I got home and realized we forgot a couple things, so Jason went to the store to pick them up. While he was gone I started peeling the potatos and it was difficult. My fingers felt so weak and each potato felt like a brick.  Peeling 3 potatos took me about 5 minutes when it should only take 30 seconds.  

Well, this is the usual.  Everything I do takes twice as long and then pair that up with high standards and you have quite a project. I guess that is why it is meaningful, because so much is required in everything I do.  Nothing is easy, but I'm not prepared to compromise standards.  

I try not to get upset but it is so glaringly obvious that my arms and hands are so much more weaker than a year ago. My legs had problems, but I could withstand them and crank out a meal for ten as long as it was accompanied by a good amount of stamina.  But, now my arms and fingers are getting so weak and it sometimes breaks my heart to think of the possbility of one day no longer being able to cook.

This probably won't happen for awhile, but it just requires that much more strength and stamina from me to carry on the task. I guess, I just can't let it go. I love it too much like alot of things that leave me. The love of certain things came about from losing other abilities, like running and being active, so I improvised and gave my attention to things I could do, like cooking and drawing. But now those things are slowly being taken from me.

I have alot on my mind lately and when that happens I tend to want to put my mind somewhere else, like cooking for example.  Cooking is one of my quiet places, it's comforting. My mind is at ease and purely in intution mode. I can't sit still even though that's all my body wants to do, so that is why I gve myself these little projects to keep my mind going and challenged. Plus, it's fun!

Below is my Golubtsis (stuffed cabbage) and Piergoies from scratch.  I've never made Pierogies, but they turned out really good. Inside the Piergoies is potato, carmelized minced onion, leeks and garlic all mixed with 3 cheeses, ricotta, sharp cheddar and parmesan cheese.  It was a fun project, but I was cursing myself by the end of it ;).  

I Scream Ice Cream

It's an ice cream Häagen-Dazs, Ben & Jerry's, Baskin-Robbins, Freaky Ice, Good Humor, Dairy Queen, Edy's, Mother Dairy, Nestle, Stroh's, Schwan's, Pink Berry, Blue Bunny, NOT Healthy Choice ice cream kinda day. What a crappy day.

I. HATE. You. HIBM.

 With everything I am, I hate you.

Tomorrow will be better, time to eat a carton of ice cream.

Ominously Lovely

Driving through amazingness mixed in with heavy dense storm clouds. Lovely.

Before I Was Kam

This one is of me, before I was "Kam".  

Since, I went back to Korea in 2010 to visit my orphanage and foster mother, I've been wanting to illustrate some of the  moments I experienced while there, but life catches up to you and nine months later I'm only starting to think about that time again.  

Tracing steps I never knew was truly a wonderful and fantastically surreal experience, and something I don't take for granted. I was an orphan until about 4 years of age, but never realized how long 4 years is to a child until I stepped back in time.  I never realized how much to-and-fro I did in the first year of my life. I had no stability, no home, no one who called me their own.  I was just another child in the crowd who shared the same quandary with those around them.  

The first 4 years of a child's life are supposed to be crucial and the most important. While there I remembered trying to get a sense of what I may have been like years ago in my birth town.  

Through past paperwork that listed my traits and now visual verification, I tried to mentally piece together my life in Korea. I would imaginatively superimpose my 4 year old body running around in the streets of my orphanage and for some reason this memory always includes me running around with a ball.  While growing up I never really thought much of Korea so I didn't spend my life hating that I was adopted and accepted my adoptive family as my actual family.

But, surely there were always remnants of my past memories seeping beneath my skin. I'm sure.  Memories that I could only appreciate as an adult.

I have a ton of footage from this trip (Korea and Thailand) and plan to compile it in a little video montage. I hope to do this soon.  After doing this piece I realized I'd like to later do a series of little orphan Kam. In this illustration the Korean hangul (alphabet) writing is my korean name, Young Eun Kim. 

It was an amazing and unforgettable experience and I have to share it here soon.  I keep saying "soon". I think I should rename my blog SOON.

Dead Wait

I keep saying I am going to update here, but I'm afraid I haven't been very good about it lately.  

There is definitely plenty happening and I feel busier than ever with endeavors and projects flying around summoning me.  I think Jason thinks I'm crazy with the level of work or ambitions I give myself.  I can't help it.  My body limits me, but most of the time I have to work just that much harder to maintain the level or standard that I did before. Still, it can get tiring, for sure, but I just don't know any other way.  

I feel like I'm running a never ending marathon with no water breaks, but at the same time I'm not prepared to sit around and do nothing - waiting, being sad or hoping for it to get better.

Not that I don't have my sad days. I most definitely do. I'm just not built that way, I guess. I don't believe in that.  Hope can only meet you halfway. It's a symbiotic relationship.  You can't hope to become more successful if you don't work hard.  You can't hope that the world had better people in it, if you yourself don't care about others. Or the cliche saying - who said it? "you can't hope to win the lottery, if you've never bought a ticket".  And, you can't hope that your friend will get better, if you've never helped them.

Just waiting around can cause "death".  

However tiring, I think I would rather reach the end of my life really tired from living out too many ambitions or for others, than well rested - living leisurely and just for myself.

It's been a time of alot of changes in many aspects, professionally and personally. Some that requires picking a new direction where new opportunities and new experiences await, and other changes that I don't really get to pick, but forced to adapt to.

Crossroads, if you will.  I have a bunch of updates waiting to be posted. I wish I had more time to post here.

Until then, I've gotten back to illustrating lately and should probably upload them here. This one is my most recent.  I woke up this morning and immediately my arms began to talk to me. They felt heavy. Heavier than yesterday.  

I don't like feeling my arms weaken. It's an experience I'm not sure I could describe.  Everything is in seemingly slow motion. This is no fun ride and I'm doing my best to tell myself everything will be ok.

Though, the feeling is a similar experience to my legs, it's different in its own right.  My arms feel heavy - like dead weights hanging and every so often another sand bag gets added while it awaits my body's breaking point.  I dislike this feeling immensely but I feel like I have no choice, even though, at times, I still dissect potential escape plan routes to see if somewhere a choice is hidden and I just missed it.

Instead, it tells me, "You have no say in this...just wait".  I sense the convergence where my arms meet my shoulders and it feels considerable.  

So, this is how I could visually communicate the feeling - bags of sand weighing down what already feels like a wooden body.

Morning Pastures

A little early morning inspiration before a day of drawing - a beautiful morning in the rolling pastures. Started out in the woods, then through farmland, grazing pastures and emptied out into the rolling hills flanking the shore.

There is nothing I like better than exploring, it temporarily satisfies my unremitting need for stimuli. 


I've been cranking out illustrations for a Pecha Kuchu presentation I've been invited to give this Monday in downtown San Fran. The rules: 20 slides, 20 seconds each. I've decided that each of my slides will be hand drawings. I'll post them and be back here soon. Have a wonderful weekend :).

http://pecha-kucha.org/night/san-francisco/44

Bike for Kam, It's a Wrap

Well, the project has come to a close...almost.  At least as far as the website and material, I am done!

B4K succeeded its $20,000 goal and we are still going.  This week the team found out that we are finalists in ABC7's Pay it Forward Contest.  ABC7 gives seven (soCal) people $7,000 and they pay it forward to a worthy non profit organization that will do something good with it.

We find out if our little B4K wins May 23rd.  I have to fly back down to LA in a couple days for the ABC7 interview.  Anyways, I will give a better update later.  I have alot to share, the problem is getting here to share it ;).

Meanwhile, I did a final B4K wrap up post for all those who supported and obviously for the guys who did the bike ride.  Below is a compilation video I put together of their 500 miles using their mobile phone and handlebar footage they took from the road.  

"Rather than explaining the gamut of their journey and the crossing of the finish line, I thought it would be fitting to end the way we began; through the guys and their words.  From the six of them I collected their mobile phone video clips, handle bar camera footage and pictures and assembled them into one sequential video compilation as a ‘thank you’ to everyone who supported us.  I also wanted to did it for the guys, you know, so when they are in that reminiscing mood they have something to visit  .

While, I don’t directly know every person who donated or have your emails, so that I can send a personal thanks, I thought I would express my  gratitude the best way I know how…through sharing.

I guess I wanted this project to be more than just clicking the, “submit” button on your credit card transaction, I guess I wanted you to also get something out of this and feel like you were along for the ride.  I hope you did.

I’ll keep my final words brief. If you have been following us, I guess you know I am not that brief. It’s something I am working on.  I guess by now we figure if  you are following us then you don’t mind the length of a post in exchange for the story.

Swiss Psychologist, Carl Jung, said, “The meeting of two personalities is like the contact of two chemical substances: if there is any reaction, both are transformed.”

Surprisingly, what was an effort to raise some money and expand awareness turned into much more.  It was about relationship building, growth of personal expectations and another memory to file away in our personal scrapbooks.  The people we meet and the decisions we make effect and create new potential blocks in our personal space.

While, I am ecstatic about the project’s success, expanded awareness and reaching our 20K goal (!!), I’m almost equally delighted by the guy’s reaction to the ride and this project.  The things they have shared and how much they learned is truly gratifying for me.  There are different types of friends you make throughout your life.  The ones you befriend for social reasons to party or shoot the breeze with, and the ones you meet in difficult situations that encompass the realness of a relationship.  I’m  concerned with the intimacy of their lives, their personal growth and I am selfishly satisfied that Mikey, Hieu, Ted, Viet, Andres and Ben received a little something from this project.

The project, though focused and organized, sort of developed organically.  It was alot of work; the sleepless nights, the endless campaigning and was my first real grassroots event alone and with this team. I didn’t know what to expect from the guys as some of them self-admit their disorganization or “flakiness”.  However, I experienced none of that.  They were truly committed and they showed me how they care not just through words, but by showing up all suited for action, and though we were all new to it our passion was enough to push us forward.  My instructive emails to them were overflowing and I am sure many times they thought I was crazy, but, we had the best time together.  I didn’t anticipate the amount of work it required for the project to strike a consistent beat, but it had a momentum of its own and we were all along for the ride.  At times it felt like we were kids on the neighborhood block.  Me with my tin can connected to them through a string with them on the receiving end as they set up camp.  ‘Bike for Kam’ was hard work, fun, creative, dangerous, unpredictable, team work, camaraderie, smelly? and all the things in between.

The project bought added understanding that while we all face some challenges and uphill battles, we can make it through and even more so through the aid of an extended hand of a friend. Every time I tell my story my personal realization meter goes up.  The memories of my once physical moments drip over me like a second skin of remembrance.  “I can’t take my mind off you…not even if I tried.”  It serves as a constant reminder of what I should strive to work towards.  Not just a cure, but building myself and to care and love the things I choose, and sometimes don’t choose, to give my attention to.  To constantly grow and improve.  The loss touches me in ways I’ve never been touched before, experiencing seemingly dissimilar parts painted in one broad stroke that sometimes blurs the good and the bad.

As Mr. (Fred) Rogers says, “You rarely have time for everything you want in this life, so you need to make choices. And hopefully your choices can come from a deep sense of who you are.”

I thank everyone that donated and showed their support.  To my friends and family; from west coast, to midwest, to east coast and to those abroad, thank you for always being there.  Your support was than motivating to our little team.

To my friends, Andres, Viet, Steve, Mikey, Ted, Hieu, Ben and Romeo, thanks for doing this trip with me.  At times I felt like the producer, mother hen, and one of the guys.  While I know Andres, Viet and Ted, I met Mikey, Hieu and Ben only through this project.  What nice guys.  They, and their social circle, went out of their way for me the way any lifelong friend would do for their friend. Their parents should be proud.  Thanks to Andres, Viet and Ted whom I grew closer to throughout the course of this trip. I won’t get sappy.  I tell you how I feel all the time, but you guys are great.

I’ll carry the memory of this project when I struggle with the simplest of tasks, a task, for some, that is as effortless and equivalent to breathing.  I’ll remember all the great support we found here.  100% of proceeds goes to ARM and HIBM Medical Research.  Just because Bike for Kam is finished, doesn’t mean you can’t stay involved.  Visit ARM once in awhile and see what they are up to. "

Check out what the guys had to say for their final words through text, podcast and video memo form.  (Click Here)

 

Like Clockwork

2 AM wake up call. She and I are 'ol friends. Like clockwork, I awaken at the same time every night. I wake up feeling like I'm bored of sleeping and don't return to slumber till 5am. Not sure why.

Bike for Kam Finish Line - Day Four, Five & Six

The guys crossed the Santa Monica Pier finish line Saturday, April 30 at 3pm. 6 days, 500 miles.

Today, we also offically reached our 20K goal and numbers are still rising. I've been away from my blog for awhile now, but I will be back soon. I kind of wished I would have kept up with my blog during the creating of this bike project because alot happened and there were moments that were really tough and moments that were really amazing.  

I said it before, but working on a project where you yourself is the subject can be difficult, trying and sometimes I was surprised and sometimes it was all too real to me.  

Odd, since for the past 4 years I have been no stranger to putting my life out there.  If I can, I will write down some of my thoughts here at a later date, but until then read the final days of the guy's bike ride. It was great.

I copied and pasted their Day FOUR, FIVE and SIX online bike journal from our website.  Read about their journey below.

Day FOUR: Wednesday, April 27, 2011

Today would prove to be the toughest and most miles biked in a day thus far.  With 120 miles under their belt the team experienced some difficulties, but also great enjoyment and supportive team work.

Because of the Gorda landslide from Day THREE they were forced to take an alternate route.  One of these suggested routes potentially would add on an 4 extra days to their trip, days they couldn’t afford to add since Ted has a wedding to attend this Saturday. A friend’s wedding that he has known since grade school, so there is no option in missing it.  

Rather than the team separating and sending Ted ahead the team is committed to pushing themselves as hard as possible so they can stay together and arrive at the final destination together this Saturday, April 30, 2011 at Santa Monica Pier.

Depending on how the next couple days go will affect this preferred goal.

Again, I’ll do my best to recap here.  I have a page of daily chicken scratch notes where I jot their stories down and later re-write them here.

We hope you are enjoying these updates as much as the guys are enjoying the ride.  Last night they texted me at midnight and were just arriving at a resting stop. It was a long day so instead we did our daily catch up call at 7am this morning.

They achieved the entire loop circumnavigating the suggested Big Sur route. Later they were told by a road worker that this was a wise decision as the Naciemento-Fergusson road is brutal, grueling and entirely downhill.

If they had time on their hands the team may have tackled the challenge, but alas they have jobs to get back to, and Oh, that childhood friend’s wedding. Can’t miss that.

They owe much assistance to a great tail wind that pushed them through the Valley, and while riding the not so dangerous shoulder they took advantage of the wind as far as it would take them .  

They considered it the most entertaining and fun ride thus far. Strong tail wind, flat beautiful land with crazy rolling hills peaking in and out, great company and a slingshot peeking out of their bag.  

They said the Valley felt like a roller coaster and for about 5 miles they almost didn’t need to pedal. Winds were pushing them and they were moving fast. They had so much fun on this stretch that they kinda wanted to go back to the front of the line and do the ride again. Yes, just like a roller coaster.  

One of the highlights of the day was riding through the valley past a field of migrant workers. One big Mexican fellow held up his farming tool saying, “Keep going, homies Keep going!” At this point the field followed in unison screaming and raising their tools.

With busting stomachs, and needing some major food load up, they stopped in Gonzales for a Golden Arches pig fest.  It is estimated that each of them is consuming 8,000-10,000 calories a day. Voracious appetite isn’t quite an adequate word. They just can’t get enough food.  

Andres himself made three trips to the McDonald’s counter, which is probably about 4,000 calories and $30 in one sitting. Viet one upped him with four trips to the counter.  

But, no time to linger, they needed to devour their food as fast as possible and hit the road. They even strapped some of their carry-out burgers to their bikes.  

”Save that for later“, they say.

They arrive in King City. Kind of charming, slightly eery, industrial, full of farm equipment and huge trucks. They stopped to eat the sandwiches they had strapped to their bikes back in Gonzales city.  Good thing the goods were safely buckled in.  

While there a local told them the road they were going to take would be a problem.  The guys were trying to go straight south but this road would take them back east inland to some really windy hills.  The road was also privately blocked by the owners. The local suggested that a faster route would be the 101.  At first they were hesitant, but gave it a try.  Everything was fine. A nice wide shoulder with fast traffic and lots of big rigs passing on by.

They arrive in San Ardos, a small town where they met some interesting locals. The guys were looking for directions and came across an old, tough and gritty gentleman with a little hyperactive boy who would only stop running around and flinging bottle caps for some beef jerky that the Bike for Kam team offered him.  

They asked him for directions and his reply was, “Just get on the freeway (101), cops won’t fuck with you, just tell ‘em about Kam!”  

Needless to say these guys were excited and supportive when they heard why the guys were riding. For Kam.

They met their friend, a drunk Mexican fully loaded with tattoos all over his body, and every time the guys would finish a bottle of water or Gatorade he would ask them if he could have it for the recycling bin.  

Ahhhh, a gentleman who cares about the earth…or 10 cents.  

They were told San Ardo is where a lot of people with sketchy pasts hide out in and they happened to meet such a fella while passing through town. At least they met the back of him.  

The guys asked to take a picture with him and he replied with, “no, no, absolutely not“, jumped in his truck and took off at full speed.  

Later, as they were biking out of town they spotted his truck a few houses down.  

Obviously, he’s not very good at hiding out.

The team was excited. They were covering alot of ground despite the enormous amount of highway debris cluttering their path. Not just a wrapper here and there but trees, bottles and huge patches of garbage that required careful navigation.  

Out of four days they managed no flats, but on this highway of trash it was bound to happen. Viet gets the first flat of the group with a big rip in the side of his tire.  

With unwavering traffic streaming past them he was able to quickly put a new tube on and get it back to form. Ten minutes later it was Andres’ turn.  

Hey, they do things as a group.  Those who flat together, stay together.

Andres gets a rear flat and changed it as fast as he could and jumped back on the road.

Five minutes later Andres gets another flat.  The first time he had missed a piece of wire stuck in the outside. He quickly changes it and the team continues on.

The shoulder was nice and wide, but parts of it disappeared and they were also dealing with carefully timing when they could ride past the on and off ramps.  As a team they safely got through the messy traffic; a true 8 bit game of Frogger.

By this time night was drawing in, so on went the bike lights and christmas lights for all to see.

All of a sudden the 101 shoulder becomes crazy.  They said it was nothing they had ever seen before as the whole thing was segmented and was like riding over a giant ladder. It was brutal. Speed bump after speed bump of chewed up concrete bouncing their bikes to the point that it may have “knocked some fillings out”.  

Everywhere, there were rocks and debris that had slid down from the hill.  On a broken highway…under dark skies…with a heavy load.  

Suddenly, Hieu gets a pinched flat, something he didn’t even notice until Viet pointed it out. Hieu’s flat was the most difficult flat of the day.

The time they thought they would gain on the 101 they were losing because of all these flats.  

Goodness, at this rate they could have set up a bike shop on the side of the road.  

With four flats ,land no down payment for their ”shoulder bike repair shop”they decide to retreat and exit onto mission street.

Ahhhh, yes. smooth flat side road never looked so darn beautiful. Despite all these catastrophes spirits have never been so high.

The more catastrophes, the more they laugh.  

The more difficulty, the more they push forward out of pure enjoyment.

Miguel is the next city, but unfortunately full of nothing, so they have to bypass it and press forward to Paso Robles, a slightly more bustling city. At this point they are riding on a flat road along 101 and 3 or 4 miles past San Miguel with 8 more miles until they reach Paso Robles.  

Crazy hungry all they could think of was the land of food that lay before them.

Just a little more pedaling and soon it will all be worth it.  

Having fun riding through the night they felt like the Goonies with food as their hidden treasure and motivation.

At this point they were over 100 miles; exhausted, achy, in pain and hungry, and yet the pure satisfaction of accomplishment and strokes of humor gave them enough adrenaline to keep pushing forward.

Finally, they arrive in Paso Rablos!! By this time there wasn’t much open except Denny’s.

You can always rely on good ol’ Denny’s. You can only imagine the pig-out session they had. They piled into the restraurant with aching bodies and open stomachs.  

A few of the guys are experiencing injuries.  Viet’s achilles tendon started hurting way back in King City. He switched his pedaling style to help relieve the pressure and it seemed to take some of the stress off.  

Ben has some knee problems, Ted has hip pain from when Ben and his bike collided and flipped earlier and Andres has lower back pain and his achilles tendon, an old wound, has flared up once again.  

They admit that they probably over did it, but don’t necessarily regret it.

Midnight and 15 hours later everyone is just a little delirious. On the road Ben was hallucinating and began seeing bunny rabbits. Good thing Andres didn’t see them, because he would have ripped out his slingshot and tore that dream to shreds.  

After a day like this they decided that the team earned a night in a cheap hotel where cheap beds and bubble bath awaited them.

Again, the team is getting stronger and enjoying the open road as much as it could be enjoyed. The dynamics are changing. At the beginning of the trip they were a little softer and couldn’t handle exhaustion as well, so would stop frequently for food and rest, but now they power through it and support each other’s pace.  

Mikey and Hieu were specifically praised.  Viet, Andres and Ted are probably the most experienced riders of the group, but still haven’t done anything like crosscountry before, but Mikey and Hieu are JUST getting into it. Mikey only had 2 weeks of conditioning prior and Hieu is not an experienced rider at all. Really, Mikey and Hieu’s commitment to helping ne, someone they barely know, was one of the major reasons of joining the ride despite their inexperience with extreme biking.  

They were nervous at the beginning, but didn’t allow the nerves to stop them from joining. By the fourth day they have really grown and as Andres proudly praises them, he states that they are handling it really well.  120 miles fully loaded is hardcore and hard for any experienced biker. Keeping up, never whining or complaining, they just powered through it with smiles.

The most vital part of their body that they are learning, and using, is  their psychological muscle.  Despite the difficulty on their body their spirits are high and everyone is having fun – loving every minute of it.  When it hurts it only helps motivate them more.  

I found this interesting as this is how I feel about my body 24/7.  When I am truly struggling and I can’t do the most simplest task, I may cry, get discouraged, get sad, but then I retreat to motivation - even when it hurts.  

It doesn’t mean that this motivation will allow me to do a physical task that my body just WON’T or CANNOT do no matter how much I push, but at least I can mentally precede and do my best to pick myself up.

I hope I am doing the team’s journey justice on here. As I sit here behind the computer receiving their updates, pictures, stories and laughter I am very proud of them and in a way feel like I am there with them standing on their bike pegs. Even apart we are still acting as a team.  I hope you feel like you are there with them, too.  

On that note I will leave you with one final image, because it is my favorite and it’s what makes me proud of our little team. The team has met alot of people on the way and many of them cheer on their efforts. They’ve also come across alot of other cyclist (groups) doing the same ride as them.  They passed one small group of cyclists fully decked out in matching sponsored outfits, carbon fiber bikes, carrying no load and the traditional tall, thin toned cyclist proportion.  

But our group is different. The guys aren't sponsored or professional cyclists with years of touring experience.  Not exactly tall and lanky, conditioned or well versed in touring.

Not exactly the most impressive bikes, compared to the pros, or sporting matching attire nor followed by mobile tent cities and road support.  

My friends consider themselves the ‘Little Rascals’ out there doing their best for their friend, for the adventure and with their bags of toys and tricks and endless boy-like humor trailing behind and in front of them.

They are attempting to arrive in Los Angeles by Saturday and I will be flying in to meet them at the finish line.  Please show your support by DONATING and sharing our journey with your friends. Together, we can do this!

TO VIEW PICTURES FROM DAY FOUR CLICK HERE

By Day FIVE: Thursday, April 28, 2011

By day five the ‘Bike for Kam’ team has developed quite the system.  How they bike as a team and how they relay messages to the stationary San Francisco girl behind the computer screen.

They have developed a routine and so have I. I feel like I’m on constant call. The first night I could barely hear Andres’ take on the day and was scrambling to make sense out of the notes I had just written. Now, I have the laptop open, Microsoft word launched and my earphones next to me ready to be plugged into my phone.

I can’t hold the phone while writing/typing. Heck, I it's harder to hold a phone. As time passes my phone feels heavier and heavier.  

It’s not changing, just me.

As soon as I hear their ring, though by now I sort of predict their call time, I drop everything, plug in the ear phones and ready, set, go I’m ready to listen to their nonsensical count of the day.  

Then, by morning I grab my oversized cup of coffee, sit at my desk filled with dinosaurs and toys and get to work on putting everything together. Usually takes hours and hours.

I told them, “Stop sending good stories, I don’t have time to do anything else!“

The last couple days this routine has occurred at midnight since they have developed quite a liking to biking into the night. I think they consider themselves outlaws on bikes…I’m not too sure.  I’m curious what they have named themselves.

But, for Day FIVE we played a little phone tag.  Last night they called me at midnight as they were just setting camp, and I think for once I was sleeping and out like a light. I answered the phone and Andres could tell I was not quite there, so right away suggested we do this in the morning.

“Sure“, I mumbled.  

Later, I woke up at 3 AM and poked Jason asking him if the guys had called yet. I didn’t remember.  6 AM I get their next call, yet again I was sleeping. I thought it was my alarm.  

I called them back right away, but they were already en route.  

Ted texts me, “We have a climb right now into Lompoc. Will call in about an hour when we break.“

I jump in the shower (well, not literally jump or else we wouldn’t need to be doing this bike campaign) and then I receive “the call”.  

I text right away, “one minute“ and get out mid-shower knowing that I may have to wait a few more hours until their next break.  I have to be on call and on their schedule.  

Ughhh, I’m not sure who they think they are. What, are they biking 500 miles or something?

Because of the long and difficult ride from Day FOUR, Day FIVE was a late start to the day. They needed to recover and were snails on the road by noon. The delay may also have something to do with Mikey needing to stretch out Viet’s sore achilles tendon (above).  

Hmmm, I’m not sure how long it takes to "stretch", but I’m not here to judge.

First, they hit…yes, you guessed it, McDonalds for some major heaps of breakfast. After the grease slam they hopped back on the road.  

The song, “On the road again” has a new meaning to them.  

Starting out slow and taking it easy they hit a few rolling climbs and pass Paso Robles farmland. It was hot. The weather, not the farm or the animals on it. Get your mind out of the gutter.

Rolling back onto the 101 they come across some fascinating roadkill including a really pretty owl. Hmmm, bad omen?

No more guiding spirits for them or depending on what tribe you are from it may mean a lifting of a curse, or a reprieve of sorts.

Either way, it was a dead owl in their way.

Ted was riding behind Viet and noticed a bolt popping off of Viet’s bike.  

A bolt just “suddenly” popping off sounds suspicious to me. I wondered if he was the victim of some practical joke. Maybe Ted, a joker, did it so he could become the hero.

You know, knock them down so you can pick them up.  

”Oh, Viet your wheel is falling apart. Gee, I think I just saved your life. No, no. no, applause needed.”  

Viet hopped off and gave it a temporary fix.  Getting closer to San Luis Obispo they rode a beautiful downhill 45mph glide on the 101. Nearing San Luis Obispo they luckily found a bike shop with a friendly tech who helped them get the parts they needed to return his bike to safe shape. Still, no one knows how the bolt “accidentally” fell off.

It’s under investigation.

As they stepped in San Luis Obispo they were tragically taunted by rows of farmer’s market selling gorgeous BBQ that locals were lining up for. Finally, real food and they didn’t have time to sit and eat. The cruelest moment ever.  

For Day FIVE their strategy is less sit down meals and more grab-and-go, quickly grabbing food at gas stations so they can continue pedaling forward fully knowing they would be biking into the night.  

Afterall, they needed to make up for the late start caused by Mikey and Viet’s “stretching”.  

However, while in San Luis Obispo, they did have time to learn and play trombone, trumpet and french horn.

Indeed, priorities.  

True entrepreneurs. The “side of the road repair shop” business didn’t work, perhaps they could start an orchestra?

They also met Nunca Mirea Atras, a race dog whose career abruptly stopped because of a broken leg. Of course, Ted, the dog lover and lover of all furry creatures, made an instant friendship with her. Ted loves animals and I am sure on many occasions has talked Andres out of slinging an unexpecting squirrel, an imaginary rabbit or an aimless wandering turkey.

Pismo Beach is the next stop and it never looked so beautiful after 2 days of 101 highway full of trash, roadkill and big rigs.  

Throwing down their bikes, bodies and gear they enjoy a well-timed sunset and debated whether or not to camp there or proceed to Lompoc, a city 30 miles away.  

By Pismo they had covered 50 miles and thought it be wise to cover 30 more. Sadly, saying goodbye to the beautiful coast of Pismo, and the DUI slapped locals that were forced to use bikes as a means of transportation (transportation for the beer they just picked up at the liquor store), they headed on toward Lompoc.  

As they headed into a remote woodsy type surrounding, night was falling fast and again on went their bike and christmas lights.  

Riding into the night is now one of their favorite parts of the trip.  

Yet, again needing directions and food they stop at a gas station where they met a very large disarming ex-cop. He shared the good ol’ days when he used to bike, like the time he toured through Canada.  

After some great stories he let them know they were screwed because the area had no camping grounds.

Ahhh, yes hit the guys slow. Sweet reminiscing and then hit them with the cold truth.

What to do? Stock up on coffee and powerbars and keep riding. Enjoying the ride through the bare and remote area they biked alongside trains, tracks and the occasional big rig under the blackened sky occupied with thousands of glowing stars.  The night belonged to them or so they thought.  

20 miles later it was time to find a nice cozy bed of grass to sleep on. Ben, with his military flashlight rigged up on his handlebars, swerved his front wheel back and forth to scope out a potential camping spot.  

To an outsider he may have looked drunk, so it was a good thing it was dark.

They spot one, so a couple of the guys slid down the hill to check it out. A ravine alongside Highway 1 near Orcutt ends up being their space of delight.  

Yes, I will be hiring these guys to book my future trips. “I’m looking for a good drainage spot to sleep in. Do you know of any?“

When they found this little gem of a spot Ted texted me, “We’re stealth camping in a ravine off of RT 1 near Orcutt. Don’t post this info until we get out alive.“

It was a bit of a hill, so one by one they lowered their bikes and gear and hopped behind the hill while forming a little barricade behind trees. Not even setting up tents they laid out their sleeping bags, pads and strung up their christmas lights.  Feeling tired, yet to wound up to sleep. Excited chatter filled up the woods.  

For an hour they joked, laughed and Ted even read Bike for Kam’s Day FOUR post to the group.  

Finally, it was time to discipline themselves to sleep for tomorrow is another full day of biking. Andres commented that again he heard some little animal rustling through the bushes in which I replied, “Was it Ted? Maybe someone is playing a practical joke on the group. Did it have fur?”  

I’m not sure why Andres is the only one that hears these “alleged” creatures in the night, but alas I am just the reporter.

This morning at 6 AM Viet’s sleeping bag had ice on it and everyone woke up freezing cold.  Quickly packing up they pushed their bikes up the hill one by one and headed to Lompoc, a brutal 5 mile climb.  

The motivation? Breakfast awaits in Lompoc.  Now, when they called me this morning they made it to the top of Lompoc and were laying in the sun for a quick break while I listened to the tales of Day FIVE.

With less than 150 miles away a Saturday, Santa Monica Pier arrival is looking good!

Currently we are at 81% of our fundraising goal with $16, 177 raised thus far. If you have been reading the daily posts you can clearly tell they are having fun.

With almost 7 weeks into developing, launching and making ‘Bike for Kam’ project happen, it has been a great first grassroots project with my 7 friends, both old and new.  

Throughout this week as I sift through their pictures and try to capture their experience I can’t help but reflect on my times as a kid among the summer of endless possibilities.

When I see the guys pictures of warm sun shining down on their bikes, I remember my old biking days. The first time as a kid when you receive your very first pair of wheels and adopt this freedom and an "anything can happen" spirit.  It’s just you and the wind and nothing can stop you, and I’ve been reliving those moments of mobility and child-like adventure through my friend’s week long journey.  

With the guy’s nervous parents, siblings and girlfriends contacting me, or patiently awaiting the next update, I feel like the guys are living like kids.  

Obviously, they are men and adults, but no matter how old any of us get we are all still young and it’s good to remember that at any age - there is still much growing to do.

It's good to live out those child-like moments every once in awhile. I guess they have been.  

I’ve been trying to work on a personalized gift to give to Viet, Andres, Ted, Mikey, Hieu, Ben, & Steve, but don’t think I will finish by the time I fly to Los Angeles tomorrow morning. I’ll have to mail it to them when I  finish. My plane ticket is booked and I will be flying to LA to meet them at the finish line.

Please show your support by DONATING and sharing their journey with your friends.  We thank you all for your commitment, donations and help with spreading our little project around. 

TO VIEW PICTURES FROM DAY FIVE CLICK HERE

On SUNDAY, May 1, 2011 there will be an after party to celebrate the team’s arrival, all the hard work and the DONORS. Please, come join us and invite your friends!!  DETAILS HERE

It’s Day SIX: Friday, April 29, 2011

It's day six, 5 AM in the morning. I'm writing this as I pack.

Last night, Day SIX, the guys called me at about 11 from Carpinteria, Ca. It sounded like they were crashing at a state beach but it seemed more like a parking lot.  Starting their ride at about 5 AM, Friday morning they woke up to ice on their sleeping bags and freezing cold weather. Two major climbs in Lompoc the first one being a 900 mile ft. climb and then a fast descent down the hill.

 Carrows restaurant was excitement of the day, their first real meal in 24 hours. Up until then it’s been McDonald’s and gas station junk food that assisted energy needs.  

After lunch they grabbed some subway and burger king to take on the road with them.  They’ve learned to have food on them at all times.

Lompoc climb #2 was a brutal 16 mile climb with nice blooming hills to offset the excessive roadkill on the road.  

Hieu received a flat about 8 miles up the climb and vultures kept circling him and the team as he fixed the tire.  

Talk about incentive to move quickly.  I’m not sure Andres’ slingshot would be of use in this situation.  With the tire fixed and moving on,  Hieu received the award for highest speed clocking in at 44mph downhill.

Arriving at Gaviota beach the coast, pier and beach was just beautiful.  

Unfortunately, beauty sometimes pays and Ted, Viet and Ben all developed some really bad allergies. Ben, the team’s designated navigator, lost his eye sight. His eyes were that swollen.  

What was the team to do?  Their live map couldn’t see…who would read the map now?  

Right away Ted got a flat on the beach. At least their was lovely music (the sound of the waves) as he fixed his tire. Returning back to the freeway and then a stop at Refugio Beach, Goleta Ca was next in line.  One of the paths up against the ocean was blocked, so jumping fences and sneaking around the little set back was required.  

A fun little trail that cut through some campgrounds let them to get back on the freeway toward Carpentia Beach.

At this point the whole team is having trouble with their achilles tendon and Andres is having trouble walking.  Ibuprofin and other pills are now like after dinner mints, continously popping them and passing the pill bottle down the line.

Getting back to the 101 Andres’ tire went flat.  If you are noticing a trend here the team has collectively garnered many flats throughout the trip. They are now experts at changing them.  

In Goleta their fine dining experience consisted of 711 convenient store and as they chowed down they came across a crew of very interesting characters. One was a grad Professor from USD Santa Barbara who said he would pass Bike for Kam around his college and student list. He was impressed with the team’s efforts and spent a good amount of time sharing our story with him.  

Next they met a much older gentleman with a California tatoo running up his arm, a tattoo he got at 17 years old.  He wished the guys well and commended them for how great they were doing.  

Another woman pointed them out and said that she saw them a few miles back on the freeway and how fast she thought they were going. They were now the “Fast and the Furious” team. They needed to get home.

Back on their backs they moved toward Santa Barbara where the civilization starting looking more familiar.  A nice gradual descent of day to night they took the residential route from Goleta through Santa Barbara.  

A great bike path they were covering lots of ground with the wind on their side and arrive at State Street, Santa Barbara; a happening stretched out downtown. As they rode through the street they received some thumbs up, cheers, but hardly noticed these praises due to strip’s temptations.

Restaurants, bars, the nightlife, it was all too tempting as they really wanted to stop and hang out with the locals, the locals being beer that is.    

But, they knew they needed to cover alot more ground if they wanted to arrive in Santa Monica Pier, so responsibly pressed on.

Coming out of the downtown’s State Street a huge windstorm came around the corner virtually knocking the team off their wheels.  

The team almost fell.  The wind caught onto Andres’ hat and turned his handlebars and pushed him into the curb. Forced to be more careful the headwinds were crazy strong and were barely making progress.  

Collective decision was to take the residential route where they faced a steep climb. By this time the streets were lined with blown down trees and branches and heavy debris blocked their sight.  

This street would eventually lead them to Carpinteria. Since the wind was drastically slowing them down they considered on stopping for the night and grabbing a hotel.  

Locals said the nearest hotel was Carpinteria, so they had to keep going anyways.  

Strangely, a tail wind picked up and they arrived at State Beach where they considered a hotel. There they made a decision to press onward to Ventura or break for the night. Andres’ dad, Romeo from Glendale, was waiting in Ventura with his bike so he could finish the tour with them.  

Team was just too tired and decided to break for the night. While a hotel would be comfy and warm, they kind of grown a liking to camping and decided to do just that. They weren’t technically allowed to camp at the beach so planned to stay and leave before anyone knew they were there.

They planned to get a couple hours sleep and wake up at 2 or 3 AM to Ventura and ultimately to Santa Monica Pier.

They biked a total of 16 hours yesterday and I could hear it in their voices. Their voices sounded a little different than the previous days. Tired, exhausted, in need of a good meal and warm bed.  I think they are ready for home and for a little while will give the ol’ bike a break.  

With 80 miles left in their 500 mile stretch they are now biking towards home.  

Viet texted his wife, “Biking back to you right now. Love you, miss you”

I’m packing up a bunch of the stuff the guys left in my house as well as a box of choco pies I promised Hieu at the finish line.  I’m afraid one day I offered him a Korean Choco Pie and now he’s hooked. See you in LA! 

TO VIEW PICTURES OF DAY SIX CLICK HERE

Currently we are at 86% of our fundraising goal with $17,222 raised thus far. Thanks to all of you. It has meant so much.

At 3pm, Saturday, April 30, 2011 Mikey, Hieu, Andres, Ben, Ted, Viet and Romeo crossed the Santa Monica PCH finish line.

What a moment it was seeing them bike down the path, wearing their team shirts and team grins.  They were tired, smelly, dirty and wonderful.

TO VIEW FINISH LINE PICTURES CLICK HERE

Little Kam Looking for Adventure

It’s Friday, April 22, 2011 and I’m prepping for the boys arrival in San Francisco.  Some are driving in today, some are flying in and taking the train tomorrow and others are flying in on Sunday.  Tomorrow I’m making them a big team dinner and so I’ve been cooking all day.  You might wonder how I am able to cook with a disability.  It’s alot of work and takes alot of planning and thinking ahead.   I love to cook and as the condition has progressed it takes me longer and forced to spread the load over a larger gap of time.  So, what I used to be able to cook in a day may now take me two days to complete.  I still do it, because I love it and it means alot to me that I still can do it.  I’m hanging onto these things that I love to do…Hanging on with everything that I have.
When you can’t do things you spend alot of time thinking of creative ways to do it anyways.  I can’t ride a bike or join my friends on this adventure, and while the adventurer in me would love to join, I can’t.  So, I designed a “lil kam” doll to go with them in my place.   I’m sewed Kam doll today and though it was my first time every sewing and my hands and fingers were weak and shaky, I finished her!  Because my HIBM is now starting to spread through my arms, hands and finger I’m losing muscle in forearms which makes dexterity difficult. Opening pens or grasping small objects, such as a sewing needle, is difficult.  Doesn’t mean I can’t still do these most things – it just means I have to work that much harder to do things like I used to.  

Anyways, it was really fun creating my first little doll and she is now ready for adventure.