Coming Soon: Bike for Kam

Hey!! ~ I've been really busy lately.  Working alot on this grassroots project that my friends and I are launching.  

Should be soon.  Been working hard at building a full-on website and gathering the team. Here they are above.  Steve is 99% done with the promo video and I am really excited for people to see it.  I cried when I saw a rough edit.  It is weird. I know I have this condition. I live with it but I don't center my life around it.  I try to still live despite it.  

But, seeing myself talk and explain the severity was really hard. I was almost shocked.  That happens every once in awhile.  I'm shocked just like everyone else.  After all, you usually just watch 'those' people on TV or the news, you're not supposed to be one of them.  I cried, because it was like explaining to myself the reality of the severity and it is a hard thing to swallow.  I try not to be fearful. I try to not let it lead me but sometimes it grabs me and the tears come.

Anyways, I'm probably just tired.  This type of (design) work takes alot of hours and days...mostly because we are doing everything ourselves.  Everything is volunteer.  Our time, our money - it all comes from us.  I've been really excited, but right at this very moment I have some insecurities if it will do well.  I hope it does...I think I feel this way right now because I've just been working on it for so long now.  But, it has been fun setting it up - I must admit.  More fun that any other ARM event or project that I've done over the years.  I think it is because there is a sense of ownership and this is our thing and our way of expressing the method of giving.  

Sometimes I feel overly worked and consumed with advocacy and I want to help others help, but I can only stretch myself so thin.  Many times people want to help, but they just don't know how to or they feel like anything they would do is not enough.  It's hard for me, because I can't be everywhere and provide materials and planning for everyone that wants to help.  Though, I wish I could.

In the website I'm building I had each of the members write a small bio. I want people to feel like they know us. I don't want them to see us as just doing a charity, but regular people sharing their lives and through it hope that someone will listen. One of the riders, Viet, sent me his bio this morning.  It was 6am and I opened it on my iphone.  I was laying in bed and I started to read it to Jason.  I couldn't read it clearly because it was making me cry, so he read it for me.  I guess many times we don't really express how we feel to one another, particularly for guys as it's not fashionable to show vulnerability.  The times I feel like no one is listening or no one 'see's' the reality -- I am proved wrong when I read such words written about me, and I realize they see exactly what is going on. They are sometimes just at a loss.

I'm incredibly thankful to the guys for taking off a week of work and putting their time into this project. It means more than I could ever express.  I'm not sure if they know it, but I feel like I'm on this marathon sometimes, and like all of us, sometimes we need that encouragement, that motivation to keep pushing on.  

I know I do.  

Sometimes, I just want to give up and leave it all, too. I've been needing more help, I'm just burnt out.  It's not just the work, but I put alot of myself into the work.  My whole being is involved and I really do care about everything I try to do. They, and this project, are my water station in the race, my encouragement that I'm not alone. My towel boys. It's better doing the work when there are others alongside you. 

In his bio Viet said he has always wanted to help but didn't know how.  Previously, I've always shared about ARM, the organization that funds research efforts to HIBM medical research, but I realize it is not about the organization that people care about, it's about the person.  I've invited friends to Galas and Telethons, while underlyingly feeling guilty, because the tickets were expensive and you get all dressed up to be in a room of people that you don't know.  This is not the type of thing that my circle of friends would be into anyways.  We position our perspective on charity around these typical notions of how it's done, but really it doesn't need to be that way.  We can re-invent and create anything we want to.

I've found that everything stems from motivation. You either want to or you don't.  If you want to then you find a way to, show it through actions, and don't provide excuses for why you don't or can't.  

There's no excuses like 'Well, I need these materials or I need you to provide me with this, or I can't because...'.  If you TRULY want to do something, you will find a way to do it.  You will find a way.  And, that is what my friends that have signed up for Bike for Kam are representing.  They've found a way. They don't know the particulars of the science that revolves the HIBM research world, or know about nonprofit culture or the order of commands or structure, they are just doing what they know and love - bike riding.

The fact is -  if you ever want to do anything in life all you really need to do is first, look at what it is that you love to do, and then go from there.  Is it art, exercise, writing, baking, church, PTO, sports, party planning, music, running, crafts, bowling...? and then use that as a platform to fundraise.  Use your birthday or holidays as an opportunity to fundraise.  There doesn't need to be a certain structure or criteria -- it just needs to be done.

I love people who rather than make excuses why they can't, they just do.  Use your passions and interests to lead you in life.  We sometimes compartmentalize our life and think we need certain skills for certain compartments when really everything is connected.  Do what you already do well and stretch it to every avenue. 

I have the same set of insecurities as everyone else. Every time I start a drawing or a project I wonder if I will be able to deliver or do it as good as the previous.  I wonder if my previous success was a fluke and I am afraid of failure as much as everyone else. Skill is one thing, but outlook is something entirely different.  I don't think it is my "skills" that matter.  When I start something it is the motivation and passion that kicks in.  I take myself out of the equation and my subconscious takes over.  Do what you already do well and multiply that.  Throw your passions in the air, because there is  place for all of them...there is a place for everyone just as you are.  You just need to put yourself out there and create your own space.  If you have passion, you have everything.

With that, yes, I am excited about this upcoming project.  It's not just about raising money and awareness, but it's about friendship...it's about experience.  It's about old friends, new friends, and it's us learning more about each other and bringing out the best potential.  I don't mean to be a weepy mess, but I'm very grateful that they have given their time to do this.  It's really inspiring. I feel inspired. I'll do my best to not feel insecurity that the project won't go well.  At least we tried, right?

With that, if you are reading this please pass around our project when it is officially launched :).  There's a possibility of launching the web address tomorrow. We need you!

Weekend Synopsis: I May be Disabled but I'm Not Dead

For this post I thought I would share what it is I do on weekends.  Hey, I may be disabled, but I'm not dead. Not every weekend is filled with excitement.  I'm either working, cooking or exploring.

First, I just saw an edit cut of the Promotional Video for the 500 mile Bike ride and it is awesome!  It made me cry and I can't wait to launch the project with my friends.  It's going to be fun and I am glad that they get something out of it, too. Experience. Can't beat it.  I'm building a full on website and Steve is finishing up the final edits of the video. You'll read about Steve later.

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So, for this weekend I pretty much stayed in and I got the itch to give myself a cooking project. Something that I had not tried before - as if I needed to pile on more projects onto myself.  I can't help it. I get bored and have to give myself something challenging or new to do or I'll go insane.  Jason always rolls his eyes when I suddenly decide to cook something that is "unecessary" or "ambitious".  Mostly because he would be fine with Spaghetti-Os. This is my audience.  

I think he wonders why I put the trouble into things. Why not just make it easier on myself?  I'm sure it comes out of concern because he doesn't want me to overwhelm myself, but I always explain to him it's something I love to do and if you love something, you do it. It's not something I want to take for granted.  I want to enjoy it while I can.  It's my mental break away.  It's a mini project that I can start and complete within an hour....mmmm, ok, sometimes 3 hours....or 10...whose counting?  He doesn't seem to complain when chomping down on the finished product. :)

This weekend I made Mandu, a Korean Dumpling, from scratch for the first time.  It was fun.  A very good exercise for my weak fingers.  

Towards the end I was getting frustrated. Frustrated from being tired, but frustrated from not being able to lift the soy sauce bottle or shuffle 2 steps to the right.  But, I finished! It was a good cooking exercise.  I noticed with some Korean cooking, like Chapchae, and these little dumplings, that there are a lot of steps in seasoning. Every ingredient, like the meat mixture, then the chives, then the mushrooms/onions, and the tofu, you mix and season them seperately, then combine them in a bowl and mix once more. Seasoning!! Very important in all cooking. Create the balance.  Love and season every section so they all sing together.

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After I finished making the Mandu, I of course tried making Ddeok Mandu Guk.  It's a Korean soup and one of my personal favorites. It's kind of equivalent to Chicken Noodle soup, yet so much better. The key is all in the broth.  If your broth is not good, then you don't have a good soup.

This was from a couple weekends ago. One of those exploring weekends.  I went to the Best Coast concert at the St. Regency Center in downtown SF. I like their music. Check them out.

It was a fun experience, lots of sweaty people who don't see the girl sitting in a wheelchair.  It was so crowded and I was packed tight like a sardine among a bunch of raving sardines. I was right at the front and couldn't really see the concert. This girl that was next to me befriended me and started chatting it up.  She is a graphic designer for Modcloth.com.  She eventually asked me why I was in a chair.  I suspect everyone wants to ask this question, but they refrain out of fear of reaction.  I don't mind talking about it. I figure if I do that just means one more person who didn't know about this rare condition now does.  

So, she was surprised and said,

"Wow, you seem really cool. Must be hard for you to be out in this type of siutation (crowded concert where no one cares about you)."  

I said, "No, not really"

She seemed a little surprised and I could tell in her face she was thinking that one over for awhile.  Eventually she started tapping on the tall shoulders of all the people swarmed around me. She didn't think it was right that I couldn't see the concert even though I was nearly at the front of the mob. She started pushing people and telling them, "If we work together, we can do this".  

She was sweet and even got a few people to move.  Most of them were kids, too young to care or understand.  I was actually fine with sitting there and listening while not seeing the performers.  I try not to go out in the world expecting people to give me special treatment because of my disability.  I prefer to see people come to it on their own, like that girl at the concert. We took some time to get to know each other-she thought about it-and came to the conclusion of trying to help out the situation.  She did it and it wasn't me that forced myself onto others telling them they should treat me a certain way because I'm "disabled".  She was slightly successful in moving the crowd, but it was too loud for people to care. The musicians were ripping and everyone was in the moment.  She eventually disappeared and moments later I felt a tapping on my shoulder.  It was security. They pulled me to the side and told me to watch the concert from the side of the stage and told me if I ever come back to tell 'so&so' manager that I'm there and they would take care of me.  I saw the girl in the hat as security pulled me out of the crowd and she smiled at me. She didn't tell me she was the one who told security to help, but I think it was her.

Other things we did that weekend was stop by Oakland's huge elephant sale, Farmer's market and did some cooking.  It was good.

This particular weekend I had an itch to go explore downtown San Fran. Look at graffitti, some art, eat some food and then we hiked over to a Regional Park near us. It was great!  Ran into a few Banksy's and seen they had changed. Someone trespassed his 'No Trespassing' art.

I kind of like graffitti art for the very reason that it feels very temporary and vulnerable. Any one can paint over it at any time and weather ages it.  It's not art that is protected all wrapped up tight in museums.  

Some of the graffitti we saw was pretty amazing. The amount of time it takes to do a wall mural for something so temporary is interesting.  So, I admire the reason to do something more than the final product.  Like Goldworthy or Christo/Claude who create environment works of art that only last a short time. Though, as much as I love Christo the amount of money it costs to fund those projects is astounding. I sometimes feel the money could go to something more needed but I still like it.

My ID Portfolio

Thought I'd post my online portfolio.  Some examples of what it is I do for a living, what brings home bacon and great pleasure.  I love what I do and I am so thankful to have found art/design as not only a career, but something I actually enjoy.  If ever I do get to the stage of immobility, I know at least I can still have passion and love for what I do.  I am fortunate that my work has nothing to do with using my body, but rather using my heart, mind and imagination. I think it is something I work hard at, because I know not to take it for granted.  We take passion for granted.  Not for the reasons of fame, financial gain or climbing the ladder, but because it is an extension of oneself. Click Here

Shoo Flu, Shoo

I've been meaning to recap my weekends here, but not exactly consistent with it.  

I'd like to show my interests, things we do around the city, etc.  

Just because I have a disability doesn't mean life stops, and though I mainly speak about my personal limitations here- it doesn't mean HIBM is the only thing I'm interested in.  

I think sometimes people think because you have a disability you're not interested in other things, or more so can't be.

I think this is not out of meaness, but perhaps  because many have not experienced those with limitations within their social or work circle, so when they see one they automatically think their world is limited. And when they see someone disabled out in the world or accomplished they stop, pause and wonder how that is.  

Then they congratulate the disabled for challenging the world not built for them. Limitation is only in the mind's eye and able bodied are not exempt from limiting themselves.

This weekend was not exciting, however, since I spent most of it recovering.  I hate staying in bed.  I've had the flu since last Thursday. It started Wednesday evening and then escalated mid Thursday morning. I was home alone, so Pippi was my only caretaker until Jason got home.  She saw how pathetic I was and curled up right under my chin.  

Who is taking care of who?  

I'm told I barely got sick as a kid. While most kids had pink eye, colds, strep throat, flu I somehow managed to avoid these. I guess I was saving up for the big one...HIBM.  It was only a couple years ago that I got the flu for the first time and oddly right after my very first flu shot.  It may be a lowered immune system due to HIBM, not sure, but I have a harder time fighting them off.  

I was working at my desk when it hit me and so I dragged myself to bed.  Feeling incredibly weak and outrageously freezing with hot/cold sweats, I covered myself in whatever I could find and hoped I wouldn't need to go to the bathroom until Jason got home.  I didn't think I'd be able to walk and get myself there in time.

By nature I'm always very very very cold.  My legs and feet are unbelievable, like frozen ice blocks.  If you sleep next to me you might feel like necrophiliac ;).  I feel bad for Jason when my legs get that way. Another HIBM patient told me that is because I don't have insulation because of the depleting muscles.  Makes sense.  It's not the kind of atrophy where you can visually see the muscle loss in the limbs-exposing the bones underneath. My legs and arms look normal. If you felt them, though, you wouldn't feel much muscle in them. Just hanging skin where the muscle used to be. Otherwise, I'm pleasantly plump ;).  

I have an illustration idea to show my frozen feet, depleting muscles and increasingly saggy skin.  I've wrote it down for when I have time to draw it out.  I have a long list of those.  Daily, I think of 4-5 illustrations that explain my experience and sometimes I wish I could work full-time on them. 

Not feeling much better today and still weak, congested, freezing and sore throat.  Not able to do much today, just shuffling around the house with my pockets stuffed with tissues, heating pad wrapped around me, sipping on Nyquil, hair pushed back and wearing a housecoat with a ratty old tshirt over it. Sound hot? Yea. I try.  

I use a wheelchair when I'm outside, but not in the house.  I keep myself walking while I'm in the house. Not ready to be a full-time wheelchair user quite yet. Besides, once I do then other issues arise like how do I get up and down to go to the bathroom.  Unfortunately, my arms are too weak for transferring and I definitely can't get out of it by myself. I probably could with some creative thinking, but it is not a bad idea to hold on to what walking I can.

So, here I am at the desk attempting to do some work. Not an excitiing update, but I'll have something better next time. 

The World According to Mister Rogers

It's 4AM and I can't sleep, so here are a couple Mister Rogers quotes...seems like a natural sequence of events. ;)

"I hope you're proud of yourself for the times you've said "yes," when all it meant was extra work for you and was seemingly helpful only to someone else." --Mister  Rogers

 "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. " --Mister Rogers

Mister Rogers  is an American children television series that was created and hosted by Fred Rogers.  Episodes didn't really have a plot and consisted of Rogers speaking directly to the viewer about various issues in an inviting conversational manner, taking the viewer on tours of factories, demonstrating experiments, crafts, and music, and interacting with his friends. The half-hour episodes were punctuated by a puppet segment chronicling occurrences in the neighborhood of make believe filled with creepy looking puppets.  Premiering on PBS, it would become the longest-running show on public television network.  Every episode began the same way with him putting on his iconic sneakers and ended with him taking off his sneakers while singing the theme song,  'Won't you be my neighbor?'.  

I wasn't a fan of his show, though.  I in particular liked Mr Dressup, a Canadian children's television series that also integrated creepy puppets.  I know, I'm a traitor.  Mister Rogers was a little too "good or perfect" for me, not that Mr. Dressup was some revolutionary outlaw in children's television ;).  

But, later I kind of liked more offbeat kids programs like, 'You Can't Do That on Television' and the like.  I digress.  

Mr. Dressup was pretty much the same formula with a different delivery.  Mister Rogers seemed more stoic and controlled, and Mr. Dressup was a little more casual and quirky. Plus, he seemed to focus on making crafty artsy things. He  would lead children through a series of songs, stories, arts, crafts and imagination games, with the help of his "friends".  Yes, "friends". I don't know about you, but anyone who speaks to puppets voluntarily has to have a screw loose and I mean this in a good way.

But, Mister Rogers won tons of awards including lifetime achievement award. He was very soft spoken, an American educator and actually a Presbyterian minister.  He was an advocate, on government level, for public broadcasting funding and education.  He also fought the manufacturing of VCRs when Sony and the television industry objected.  Fearful of home recordings they felt it should be regulated and taxed.  As if the entertainment industry needs more money, RIGHT?

The Supreme court listened to his testimony and decided that recording did not infringe copyright.  He was all about community. As ONE you CANNOT do it, but TOGETHER, you CAN.  Scratch that, I shouldn't say ONE can't do it, but it does make it a whole lot easier if everyone is pitching in.

Random post, but I liked his quotes and what he tried to do. What have we learned? Creepy puppets are cool. Indeed.

Work for others, community, passion and promoting imagination...one of the most important things I think we should have. There are some things from a childhood that are never forgotten, and underlyingly influences us. I tend to have more memories of what was good rather than what was bad, and tend to remember the feelings, or the weather/environment conditions that accompanied a moment, more than the actual event.  

Not that my childhood was bad.  Sure, there was much struggle in the first part of my life, especially the first 4-6 years of my life as an orphan and adoptee, but overall I am pretty satisfied.  Not everything is perfect and that includes people.  I think you just work with what you have, try to build upon that and hope that in time they will follow.  You can't tell people how to be, you can only patiently wait, hope, and while doing so lead by example--however difficult or unfulfilling it may feel.  Work with what you have and and keep moving.  

Well, I only planned to post that quote, but it ended up turning into some long random post.  Thanks for sticking with me...if you did. If not, I don't blame you.

With that, I am looking at my blog page and I seriously need to design it. Add it to the list.  I also want to get my own domain name, which is something I'll try and do soon. I've also been wanting to make use of my 'Inspiration' tab and post things I come across whether they are related to disability or not.  I should get on that, too.  Thanks for following/reading me.

Mindflex Time

The Mindflex I designed while at Mattel just made it to Time's, 'All-TIME 100 Greatest Toys', 100 most influential toys from 1923 to present. Cool!  I'll be honest. I am a bit shocked since there are so many amazing toys out there, but still quite an honor.   

Mindfex is a levitation  game which uses brain waves to steer a ball through a customizeable obstacle course. The brain waves are captured with the enclosed EEG headset, which allows the user to speed up (more concentration) or slow down (less concentration) a fan, thus lifting or lowering the blue ball.

I designed this in the short amount of time I was there. Not bad for having no toy or game design experience prior to Mattel. It was definitely a fun project and I was the sole designer. I learned alot -- probably more about people than the actual manufacturing and process of making it.  I had the opportunity of working on the entire gamut of the project; including creatively directing the look and feel of the product and overseeing the progress from start to finish.  My main notion was to make it, as much as cost challenged toy environment and engineering limitations would allow me to, less toyetic and more neutral. I wanted this to appeal to beyond Mattel's usual demographic (below 10 years old) and an item for 'everyone'.  I guess college students like to play with this while drinking, according to Youtube.

The item has won multiple awards including Oppenheim's Best Toy Award for 2010. I'll post my drawings from my portfolio later.  The top image is a page from my folio and the below pictures I credit Pocket-Lint.

Alright, back to cooking.  Right now I am making homemade Gumbo soup. I took a break because the knife was getting heavy.  That could end up to be a bad situation if I don't take breaks.  After Jason wants to play his new video game, 'Marvel vs. Capcom' in which I have to fight him...and then beat him ;)

"Mommy, There's a Wheelchair"

In Targets right now and a little boy screamed out, "Mommy, there's a wheelchair". I laughed.

Kids are great, because they are honest. They say what adults are thinking. I told the mom not to worry or be embarrassed. A month ago we were picking up some tacos from this great little taco stand that just opened. I had to wait on the sidewalk while Jason ran in because there was no accessibility. A young couple came strolling out holding their 4 year olds hand. As they were walking in the opposite direction the little boy's head and confused eyes were glued on me and his eyes darting from me, to the chair to me, to the chair.

"Why are you in a wheelchair?" He shouted.

"Because, it's cool!", I smiled. "Oh", he replied still confused.

The parents laughed and it was instantly a comfortable moment rather than an awkward one. I tell parents not to be embarrassed, because I'm not. It's good to promote curiousity in kids. Sure, there are some people that don't want their "disability" pointed out, but for me I don't care too much. If the parent becomes embarassed or fearful I think it indirectly tells the child that something is wrong. Then you're telling your kid to pretend that anything different is not there. Look away and ignore. Instead, the opportunity should be used to show kids that differences are ok, and though they should kindly present such questions in a sensitive way, the question or wondering is ok.

Caring is NOT Creepy

I guess I should kind of explain my previous blog post.  

Last week I was in LA for multiple for doctor visits, wheelchair fitting and filming a little teaser video for my 500 mile Charity Bike Project for my condition. I will write a post about my LA visit later.  

But I was finally fitted for a serious wheelchair and I can't deny it was a little emotional.  My time in LA was busy and I tried to fit alot in just a few days.

Friday night I had an appointment with some friends to film this bike project we are setting up. One of them cancelled and it wasn't so much the cancellation that bothered me, yet a culmination of things that seemed to instantly pile on me.

I was with Bobby, Daniel, Sandra and Sheila waiting to meet my friends when one of them cancelled. Dr. Bobby and Daniel Darvish are brothers and the founders of ARM organization, and Dr. Daniel D. is the scientist trying to get to a cure. At the moment, he is one of a few in the world working on a cure towards the debilitating condition I have.  Oh, and they are also HIBM patients. Far more progressed than I. One day I need to do a couple posts that explains the background of how I found my diagnosis and how I found ARM.  

But, for now just know it is a big part of my life. I don't have a break from HIBM physically and I don't really have a mental break from it as well.  It is always in the back of my mind and a full-time effort.  With that, sometimes being involved with something so serious can eventually gnaw at you without you knowing it. 

My friend cancelled our Friday film appointment and I was upset because it was something we had been planning for a few weeks. Not only that, but it would be the first time I would meet Steve, a generous designer who offered to film and cut a short video that we could show when we launch the 500 mile bike project in May.  

I didn't want to cancel on him in fear that he might lose interest.  It was a night of constantly changing the time, locations, texting back and forth that eventually led to cancelling, and I was getting frustrated.  

Sometimes people don't realize how much goes into scheduling multiple people and how much I need to prepare, even just showering, to get to my appointments.  I sat there at the kitchen table eating with the Darvish family and the mother, Shuku, feeding me Persian meatballs, salad, curry and basmati rice.  

My face became crinkled and I just started bursting into tears. Right into my meatballs.  

Sandra, Bobby's wife, asked what was wrong and all at once I spewed out all my frustrations.  With my face buried in both hands, I was practically wailing. 

"I hate caring so much. I wish I didn't care, I don't want to be an inspiration--I just want people to care!  I hate talking about HIBM all the time. I hate writing about it on Facebook. I hate doing a blog. I just want to hide and I don't want the responsibility anymore...I want out...out in every way...I don't know how you guys do it..." 

I guess I should explain more in depth, but it is hard to because the feelings involved with the journey of a debilitating condition is like legos. It builds.  A cry or a breakdown is not just about a singular moment, but years of learning and understanding yourself.  Years of learning through actual experience and being taught life lessons the hard way.  

Really, I don't mind talking about HIBM at all, because I want to help, and charity or not, I feel being open is better than being closed.  So, never feel like you can't ask me something, because I really AM ok with talking about it. The feeling really derives from feeling like you do so much just for ONE person to get interested and get involved. We (ARM) do not have alot of help and everyone is really tired.  Not to mention when you are a patient experiencing what the cause is for - all of this is even more taxing. 

I think it was hard for Bobby and Daniel to see me cry.  It is never easy because they too know what it feels like...more than anyone.  Because Bobby and Daniel are scientists, doctors and the face of the organization they have to hold this professional demeanor.  It is what everyone expects. You can't appear "weak".  You have to be steadfast up there on the podium or when you are wearing your white jackets.  

We put certain people on pedestals, hold them to expectations and expect them to perform or act a certain way.  It is a shame and it is wrong. We see scientists, or the like, as inaccessible...out of reach...with no feelings.  

And to make it worse they are men, so society can't allow them cry or be emotional.  But, since I have the opportunity to know them on a personal level I see how they really handle HIBM.  They handle it pretty amazingly, but are not excluded from dark moments.  I don't want to go into their personal aspects without their consent, but it is not much different than what I experience.  So, when they see me cry they often get quiet, and at times, kind of disappear from the room while Sandra or Sheila, their wives, console me. 

After I finished letting it all out I gathered myself and texted Steve, the wonderful volunteer who I had yet to meet, and told him I was still up to meeting just him so we could get acquainted before filming on Saturday. He was eager and even though I had no desire to talk about HIBM and my eyes were swollen, it was 10pm, and felt disappointed, I met with him anyways. Simply because, at least there was this one person who was an example of wanting to help, and I have to acknowledge and hold on to the ones who do help and try not to focus on the ones that don't.

 I get tired and put so much of myself into gaining awareness and sometimes it feels like it is for nothing.  Sometimes I feel like I don't make any differences.  It is not just physical effort, but much of it is emotional.  Sometimes it all catches up and I feel alone.  

I ask myself, "why do all this work...why care...? for what? So, that I can tell  hundreds of people my story --and maybe one person will step up?"  

When you put all of yourself into the things you care about, you open yourself up to vulnerability, getting hurt and a lot disappointment.  But, here is Steve that cares. Bobby and Daniel care and when I see people like that it inspires me to care even though it hurts.  To say something is inspiring is not walking past it. 

True inspiration is not a momentary feeling. If you feel it then express it. I don't want to be an inspiration. This is not why I speak.  I don't actually consider myself an inspiration. I just try to get through it like everyone else. I share because I want people to understand and then hopefully the understanding will turn to caring and hopefully the caring one day will into action.  You CAN'T expect, force or guilt people to do things or care. You can only be an example and hopefully that is enough.

But, caring is not creepy.  That is how I felt for that moment, so I shared it, but it is important to care.  If you don't, then who will?  

Caring Can Feel Creepy

I'm stuck on my back. Unable to move. Staring at the ceiling and so very tired. 

My body is not with me. Sometimes caring feels lonely. And caring is creepy. Building nothing, just laying bricks. I'm visiting LA. Tough week. I don't want to be an inspiration. I just want people to care enough to make this stop.

Sidelines

So, I promised myself no more drawings until my portfolio was finished, but this one has been stuck in my head and I finally just had to throw it up. To make it quick I did part drawing and part collage, so there, I got around keeping the promise to myself.  I'm not a huge fan of this drawing, but exploring and figured I would post it anyways. Good news is I am uploading my online work portfolio as we speak, so not too far from finishing. 

The other day I was listening to Peter Broderick and it made me think of an illustration.  Peter is an American musician and composer and in particular I like his solo piano pieces.  His stuff seems to lend toward those rainy days.  

I was listening to his Sidelines and then watched his video (below). Definitely strikes a maddening-depression sort of cord.  I know we have all experienced that before or unsure what our next step is.  I know we have all felt like this before.  We feel like we are on the sidelines watching life pass us by.  Merely spectators.  Sometimes, we feel like we are not contributing to life or not living to our full potential, and this only makes us sadder.  Sometimes, we would rather stay in bed; watch the blind's shadows move from one wall to the other, and use that as the only evidence that time has passed...the day has passed.  When I feel this way I try to get myself out of it.  Find something creative.  Find inner perspective.  See potential.  That hour, that day, that week, or however long this "sidelines" last can be difficult, but it is worth waiting it out when I see my next move.  

I may feel slow and unable to express myself physically, sometimes, trapped inside my body.  But, it is those trappings that perpetuate me to express myself in other ways, and to release myself from my own sidelines.

Sometimes, it feels like we are on the sidelines, when in fact we are right in the middle of it all where infinite possibilities are waiting for us. 

Random Bits: Parks, Tacos, Pedaling 500 Miles and Space Hopping

I told myself no more illustrations or cooking until I finish the last bit of my portfolio. Perhaps in a week I shall be completely finished with it. Until then here a couple random bits.

This past weekend was pretty quiet. Dog park overlooking San Fran, tacos, work..lolling. Weather has been absolutely perfect lately.

What else? I am in the process of organizing a little grassroots fundraising/awareness project with a couple of buddies.  A  couple of my friends offered to do a bike ride from San Fran to LA as a way to fundraise and raise awareness for my rare condition.  This is nearly a 500 mile bike ride and all proceeds will benefit biomedical research for a cure towards HIBM.  

This should be fun as bike riding is something they are passionate about. They plan to do the course over a 5 day period and I will document their daily happenings and route through a blog dedicated to the project.  I was touched when they said they gladly offered to do this for me and even a couple of their friends, who know nothing about me, have volunteered to be a part of the ride.  

It is these little moments that connect me to people, and when they go above and beyond I cherish their intentions and file it away in my memory.  Often times it is the unlikely person that ends up surprising me with showered love and support; the person I met just one time or the person whom I've never met in my life.  I guess this is what I mean by inspiration into action.  

It is easy to talk about everything that is wrong in the world, and how things need to change, but it is something entirely different when you do less speaking and more doing. It is easy to complain, but harder to follow through with any real accountability. I guess, I'm attracted to these types of people, and I feel their inspiration is genuine.  

I am excited to see how this project will progress.  For now it is called, "Pedaling for Kam" and the tentative date is the last week of April of 2011.  I will keep you posted on the details as they come to fruition. :)

With that, here is a fun little video. It would be cool to get around like this...on a shiny red floating ball.  I have a friend that I sometimes text when I am having those really bad days.  When those crazy moments happen I scream about how I hate HIBM to him through text and he usually replies with something funny or perspective oriented or sometimes says nothing at all.  He is a toy designer that I used to work with so he says he wishes we could switch my head to a helicopter body so I could get around better.  Soon after, I watched this video and it sparked a couple illustration ideas .I will have to do them later ;). 

Monster on My Ankles

You know those little floor or door ledges? Well, this drawing was inspired by that.  

My home has little moulding ledges in each doorway.  

Really, any SLIGHT rise or lift is problematic for me. I must stop, take thought and carefully guide my legs and feet over that 1/4" lift.  

My entire being has to be dedicated to this moment.

Sometimes, I can achieve this in one try and sometimes it takes several.  

This calculation would be while wearing braces. However, if I am not wearing any braces or shoes it is much more difficult to impossible.

One day I was stuck in the doorway having a problem with lifting my foot over this silly rise.  If you step back and watch me it is almost comical.  I mean, how can something so little give me such problem?  As I stood in the doorway trying to will my legs, I imagined that perhaps a creature or monster of some sort was preventing me from victory.  

"Darn monster grabs my ankle and just won't let go...every time!" I thought.  Perhaps it is angry with me.  Perhaps it wants to be near me and has a crush on me.  Perhaps it has something to tell me I'm not sure. Whatever it is, it makes everything so much more difficult then it needs to be.

So, this came out of that moment.  That tiny moment. These tiny moments are where my mind wanders, more than usual, and I try to explain these moments to myself.  Forget about explaining it to everyone else I try to explain it to myself first.  

This piece actually took a life of its own during the process or drawing it.  I had a completely different style/concept in mind.  I was struggling a little with the drawing, but eventually the style morphed into this.

Again, I am kind of learning illustration as I go. I am not trained.  All I know is the message.  I start with a moment and see how the piece transpires as I go. I have recently had some people ask me to do some illustrations for them, and I told Jason that I just don't feel that confident yet. I was trying to dissect it, so that I could understand my process of how I am learning this medium.  

When I draw these they come from me and my experience, so in many ways it feels effortless despite the lack of my technical know-how. The story is already there and thus the inspiration I feel towards it.  These moments are ripped completely from me and I try to put it on "paper".  When I draw one I am completely lost in the moment.  I don't need to "will" it to be something more or attach layered meaning, because it is already meaningful.  It's real.  So, the meaning catapults the result.  

If I was to draw someone else's story or something else, I am not sure I would feel as confident in achieving a final product.  

For this drawing, I was definitely was inspired by Persepolis' illustration style combined with Frank Miller's stark black and white contrast affects.

Weekend Repose

Not much to report for this weekend. I pretty much cooked, did work and errands...hmmm, déjà vu from last weekend?  

Just for fun, I am attempting to cook a new dish every weekend. Ever since we visited Thailand last year, I have been wanting to take a crack at cooking some homemade Thai food.  So, I finally did.

This weekend I made some Panang Curry and Som Tam, spicy green papaya salad.  I would say it turned out well and I got it to taste like it would at a restaurant. 

On Saturday night I was all excited to cook, because it was a new challenge. I love anything new that stretches me. Jason sometimes doesn't understand why I love to cook so much and often times, out of concern for my energy, he urges me to be less ambitious or limit myself to one dish. I tell him cooking is my solace, and I want to enjoy it to the best of my ability. Yes, it does require a bit more energy than the average person, but I can still do it.  It is my equivalent to going for a run, for a drive, on a walk, riding a bike...but since these are no longer an option for me I put my energy into other avenues. When I cook it is my time to completely tune out life, start and finish a project, be creative and run purely on my instincts all within a short period of time.  Besides, the advantage of cooking is there is always an immediate receiver that benefits from the project.

Not to be fearful or scared of what will happen in my future, but I sometimes think how much I would adore cooking with my future children...that and running with them while they play soccer or learn to ride their bike for the first time.  

This would be important to me.  I want to teach them so much.  With everything they do I desire for them to go above and beyond the required, and have passion for the areas in life that they deem value for their efforts to rest in. Down the road I might not be able to cook for 20 people anymore or chop my own vegetables or perhaps even move my own fingers, but at least I can teach them to love.  Love what you do and never do anything unless you plan on giving it your 100% in people, in ventures, in aspirations.  Always be curious, always be loving and fear is ok as long as you can move beyond it. Despite it. 

If you notice in the picture there is a black chair. On my really bad days I use this to help me shuffle around the house. Yes, yes I need to get a walker. That is in process. I was recently thinking on how I could increase my coolness and obviously a rollator came instantly to mind. All I need to do is wear old lady sweaters and mutter to myself and I could fit in the senior community center down the street. Oh wait, I already DO wear old lady sweaters and mutter to myself...hmmm.  

Well, I need to get back to work.