Today

Today, I'm doing great. Thought I would share.

Raining in My Yukgaejang

Anyone who knows me knows that I have a deep infinity for soup. Jason laughs at me, because wherever we go I have to have soup.

I love everything about it. It is warm, nostalgic and lovely.  

A good bowl of soup always drowns out the frownies.  Soup is especially heroic on those rainy days, even the days it feels rainy inside my body.

This post is actually from November and I finally did an illustration for it. I often tap ideas, thoughts, journal type moments into my iphone notepad.  My iphone contains alot about me. I don't always have a journal book on me, but my iphone is always by my side, so it is convenient.

My iphone is loaded with these random thoughts and moments and I often forget to post them here. The drawing, I tried a Scratchboard method. It is a technique where drawings are created using sharp tools to scrape away at the board. I always liked this. Instead of drawing, you scratch away your image and create negative space.

I remember when I wrote these notes I was having a hard day and suggested to go get some Korean food. I chose Yukejang. Yukejang is a spicy beef soup and yummy to the max. Shredded beef, clear noodles, eggs, green onion all swimming in a pool of homemade broth. This was the post I wrote in my iphone on that day.

November 2010

We rolled into the restaurant and on this particular rainy day I noticed alot of people staring at me. Usually it doesn't bother me, but I seemed to notice it more so today. I wasn't having the best of spirits anyways. Sometimes people stare and sometimes people have better things to do. I like to pretend that they are staring because I am so cool.  Hey, how can I blame them? I would stare, too if I was checking out a really cool person.  

I ordered Yukejang. I like it at this particular restaurant.  The waitress brought me my anticipated soup, and Jason and I were involved in a conversation about how people perceive disabilities...how does it make them feel?...what kind of questions do they have...?

I am always searching to understand how others deal with situations and how they perceive it, because it better helps me to better explain myself.  

The soup was in front of me, and I started crying.  I just couldn't control it. Sometimes it takes over me and I have little control.  I sometimes cry my few minutes, give or take, and then crack a joke and move on, and moving on doesn't happen that swiftly. I tried to shield my face so the people sitting next to me couldn't see me cry.  

At times when I cry, I feel like my insides are pouring out like a bowl of molten soup. I'm not depressed, but sometimes it can bring such sadness.  More than anything I hate the feeling of weakness. I hate FEELING it. My body is a recorder. It lets me feel every moment. This is the thing I hate the most. It has little to do with a wheelchair, yet the knowing that it will not stop and it will only get harder.  I hate that.  

At this point I don't need a cure. I am not resting my laurels on this to make me happy. I would, however, be more than thankful and ecstatic to gain a year back from my body, and stabilize. That is my wish.  To stabilize. Leave me with my fingers, arms and hands. Leave me with my neck capabilities. 

After eating, we wheeled to the car through the pouring rain. And again, so many more stares. Jason threw me into the car while the rain poured so hard that I couldn't even see out of the windows. Or perhaps it was my eyes. They were pouring, too. Most people never see this side of the condition.  They only see the happy. They only see "healthy" and happy pictures and composed poses on Facebook.  It is not a false representation, but there are some really, really dark and difficult moments.

As I stared out the window the city was a blur while the raindrops on the windshield came into crystal clear focus. I played connect the dots with them as they dripped down. I imagined out these raindrop's temporary existence  as well as their travels. We sat in the car for awhile.  I cried and cried.  Afterwards, we drove home.  And then I was ok.

You Know What Makes Me Mad?

While I was cooking, and cutting my few ingredients, I suddenly shouted, "You know what makes me most mad? One day I won't be able to cook.  Everything I love doing is slowly being taken from me." Selfish, selfish, selfish (HIBM)", I murmured as I continued chopping.  

It is so much tiring than its year prior. Holding a knife, chopping. I don't usually get mad about HIBM, but it keeps rearing its ugly head lately, so I just can't help it. Sometimes I scream loud at it, and then move on my way.  I learn or adapt a new interest as response to a lost ability, and then HIBM swoops down and snatches that one, too.  

I returned to my cooking and secretly told myself, "Enjoy it. Enjoy it. Just enjoy it.

Fear not, I don't usually waive knives in the air while I randomly shout.  It's like I fast forwarded to a senile, crazy 85 year old woman ;).

How Did I Get Here?

Not much to say about this one. It feels like Autumn both outside and on the inside.

Autumn is definitely one of my favorite seasons, but seasons always bring challenges along with it. I am slow like a turtle. When lying on my back, I too cannot roll over by myself.

 The laying-on-back position is by far the most challenging and almost impossible. It is challenging and gets harder as the seasons pass. Laying on my back feels strange, because I have no movement. My body feels quiet and still. I feel motionless. I feel like I'm attached to some dead foreign body. I don't know this body.

Most of the time I'm used to it, but on those off and hard days, when I don't care to be 'used to it', it makes me cry, and I think, "How did I get here? How did I get to this place? How did this happen?"

I like to conversate with my ailing limbs, but they never seem to listen. Perhaps I need to buy them hearing aids.

At times I fight it and do my best to do every creative thing in the book to get my myself out of the laying-on-back position and to a more advantageous position, like on my side for this is my ideal position, because at least I can move, roll on my stomach and try and push myself up.

I sway. I rock. I muster any energy I can. My legs don't move and neither does my torso. Unlike a turtle who has that handy rounded shell to help with his efforts, my back is flat and lends no support to my attempted rocking motion, and so I just lay there wondering, "How did I get here?"

Princess and the Pee Update

So, I've been able to get up from the toilet like I normally do (described in the previous post The Princess and the Pee) with the barstool not too far from my reach for those 'just in case' situations. And I don't mean for an afternoon drink or do I? ;) 

Have to celebrate the little things...

The Princess and the Pee

I wrote this post a couple weeks ago, but just did an illustration for it today. It is cute and light-hearted, but honestly, I feel anything but.  It's been rough the last couple weeks.  Feeling highly unmotivated and..well...sad in general. One day I should break out all the illustrations I want to do that have a more serious tone, but this 'princess and the pea' was next on the list. 

November 23, 2010.

The last week and a half I've had increased difficulty  getting up from my toilet at home.  At the beginning of this year I had to get one of those raised (elevated) toilet seats, so I can get up by myself when I am home alone.

Nowadays, if I am anywhere but home, I need help to get up from any seated position, especially the toilet. Toilets are too low for me. In my 3.5 years in California I have lived in 3 apartments and in each one of them I always have to figure out new and inventive ways to get up by myself, and my current home is no exception.

This combined with increased weakness forced me to get a 'booster' seat this year. Getting the raised toilet seat was like pure freedom.  At the beginning of this year it was already getting hard for me to get up and down and since I am working from home it was important for me to be able to do this on my own.

But, the last couple weeks it has been harder to get up even with my booster seat.  Sometimes I need to keep trying and this trying can last for 10-20 min.  Today was the worst, though. I sat there and tried to get up for nearly 40 min. My bathroom is fairly small and with any new bathroom, or new environment, I need to have creative planning at hand.  

How I usually get up is:  The toilet is right next to the door. I grab onto the door knob with my left hand and position my left foot in front of the door. This way I have leverage and can balance the opposing strengths. I pull myself up with my left hand, push against the door with my left foot and simultaneously I push up with my right hand that is resting on the 'booster' seat. Due to the length of my arm I can only push so high, so I rely on positioning my hips, so that my leg can rest in the hip socket and I can push the rest with my leg.

But, today this wasn't even working.  I keep trying, but just plopped back down.  Eventually I had to stop and rest so that my legs wouldn't tire or damage to the point where it's impossible for me to use them.  After each failed attempt I grunted, groaned, pleaded and got increasingly angry--hoping that the anger would drag up any hidden energy left in my leg.  

"This is ridiculous", I kept thinking.  

The house sounds so still. I can hear the furnace wheezing, the birds outside, Pippi's pacing paws on the wood floor, my home's every breath. It's so quiet and I feel alone.  

As I keep trying I am dangling in the air hoping, awaiting to see if I have the right balance or lift, but end up falling on the toilet once again.

"If only my booster seat was taller" I thought.  

Dropping down is easy, it's the getting up and lifting that is hard. During this ordeal, for some reason I thought of the fairytale The Princess and the Pea.

It's about a young woman whose royal identity is established by a test of her physical sensitivity to a stack of mattresses that cover a single pea. This single pea at the bottom of the bed keeps the young woman awake the entire night. Since, only a true princess would have the sensitivity to feel a pea through a stack of 40 mattresses she is crowned princess.

As I am trying to creatively figure a way to get up off this overly warmed toilet seat, I imagine stacking up these toilet seats, so that I have enough height to stand without a problem.  I don't expect a prince at the end of this feat, I just want to be able to stand up. 

I still remember, about 8years ago, when a doctor asked me if I had a hard time getting up and down. Back then I had NO problems getting up from a seated position and often found his questions puzzling, but now it has become virtually impossible and the symptoms of HIBM are stacking up one by one--revealing its true form.  Any seat I sit in has to be a perfect height and my environment fixed a special way for me to be able to get up by myself.

We went searching for an alternative toilet solution. Unfortunately, there is nothing out there. I mean, there are things, but they don't tailor to every type of condition and their specific needs.

My current booster seat is 5" tall.  I think a 7" would work. We tried toilet side-rails but my arms are too weak for me to push myself up with that configuration.

We tried one of those adjustable toilet seats that uses nuts/bolts, but that was too unstable.

I'm not disabled enough to need to hire assistance and if I did it would only cause me to rely on others more and my progression would come more rapidly. So, the current solution, which is working, is a barstool.  

No, I don't shake up martinis and cosmos on my toilet, though not a bad idea for the future. I use the stool as a platform and leverage, in the same way I get up and down from my desk. I place it in front of me, lean on it and then push myself up with both legs and arms.

Going to the bathroom is something we don't think about. It's easy. We do our thing and don't give it another thought.  But, for me, and others like me, going to the bathroom is an increasing ordeal.  

With that, I crown myself The Princess and the Pee.  

I can make humor out of anything, but at the time it is happening, it is anything but funny.  I get intensely frustrated and feel way too alone, and these moments only remind me of the long road yet to come.  These moments will only increase in number as time progresses.  Sometimes I'm not sure if I have the "strength" to endure all that is ahead of me...but, I'll keep trying.

Be You and Industrial Design - What Is It?

Lately, I've been working day and night on my portfolio and by the end it will probably near 90 pages.

I've been so busy with freelance, ARM and setting up projects and new processes for them, that I haven't had as much time for my work.  So, currently I am attempting to drown everything else out and focus on completing my portfolio for my job search.  

I thought I would post some of my portfolio pages here and show what it is I do for a living. I worked at Mattel for a couple years and here (below) was one of my projects: their UNO Brand.  Below (left to right) is my lead in page.  I took each of their brands (Games group) and simplified them into a fun modern icon. (Right) is my pitch of where UNO brand is and where it could be (On the right side of this second attachment  is some of my design proposals/drawings).  

Below that is a series of Marketing pitches where I visually showed why it is a good idea to change, update and what that can do to their brand and company. While at Mattel my job probably only required me to sketch a plastic housing, but I guess I couldn't just do that and so I constantly tried to pitch new ideas and ways to expand their brands into today's culture.  

It is hard changing a brand that is so long lived and companies can be weary about doing so. Business' get scared of change and would rather keep what is familiar, but change is sometimes good. It requires a healthy balance.  Lucky for me this new look was welcomed and has done very well in the retail world, proving that yes, sometimes some thing different IS a good idea.  

Below that, attachments 5-11, are my sketches and renderings of my final product.  Sometimes a single final 'hotshot' rendering (digital painting/drawing) can take me 6 hours long. 

As a designer I get to draw the ideas and then intimately work with engineers, scheduling and costing to actually make the final product. The process involved self-managing projects and balancing the costing, schedule and product's design journey, at least this was the process at Mattel.  

An Industrial Design portfolio requires much communication and expressing your thought process and how your project evolved.  This way your career potential will be able to read into your style and thinking, and decide if you are a right fit for their studio.  

Unfortunately, a one page resume is NOT enough to get a design job. You need a book of your work. I have to take all my old drawings, many of which I needed to do new ones, and then lay them out onto a page in a pleasing and understandable manner.  

So, that is a little look into what I do as a designer. If you look at everything surrounding you; shoes, consumer electronics, wheelchairs,pens, mixers, kitchen ware, bikes, glasses, toys, furniture - it was all touched by a designer at one point.

As time has progressed, I think I am most attracted to social design and designing solutions to some major problems; whether it is in the US or in third world countries.  Social design is not your 'sexy' branch of design, but far more functionally meaningful, I think, because it really helps the end user in not just a cosmetic way. I believe I am most fortunate to be doing what I love.

Later, I'll post the link of my complete online portfolio.

Though, I give much effort in spreading awareness and help those that are trying to get us closer to a cure, it is not THE thing about me and I am not just about HIBM.  

I'd hate to be defined as just that.

I'd much rather be defined by my passions, and me creating, in whatever form, is one of them. I have spoken about design a few times on this blog. Often times people confuse or degrade design as only making things look good which in some cases that IS the thing about the project, but design is so much more than that. Design is just another example of creativity and problem solving. I think we ALL possess creative powers and it presents itself in so many forms.  

It is the taking of many dangling parts and meshing them together to form a whole picture. It is fulfilling of a need and sometimes creating a need that people didn't realize they needed. From branding to function to aesthetics to logistics to psychology to communicating to problem solving to dreaming what could be - it is a gamut of possibilities.  

I think sometimes people judge 'disabled' on a curve and they are surprised when they meet one that has any skills. This sort of quick judgement is an easy way to quickly filter through all of one's encounters and neatly arrange them on some fictitious, and sometimes egotistical, scale.

People can't be measured this way, whether you are evaluating intelligence, intellect or creativity.

I do contact patients, and open to them contacting me, and do much advocating for HIBM, but there is a fine balance to it. It is not that I ONLY want to associate myself with 'disabled' yet I don't want to disassociate myself with 'disabled'.  I just want to be 'me' and both sides describe parts of me.  I cannot deny my 'disability', but I also cannot live completely in it, too.  

Choosing one side denies my other. I believe this is how most people with a disability, or any struggle feel. They want to be seen as a person. They just want to be seen. I think this is the thing that ties all people is the desire to be seen, recognized and understood.

Give that to someone and you will see them open up.

I only wish to be assessed as 'Kam'by my passions and not by my current physical state. I have realized that the further I go into this condition, and into my own journey of self confidence, that I focus my world in that and therefore care a little less on how people immediately perceive me.  

It is not always easy and I am not perfect at confidence, but that is the point of a journey. The point is there is no ending, because it is ongoing. We never stop growing.  Slowly, I have realized that my differences is what sets me apart from everyone else and it is important to embrace that.  It is not always easy, because sometimes I do worry that on a job interview, for example, they will see me struggling and immediately evaluate me without ever seeing my work or my passion.  But, all one can do is be themselves and to never be ashamed.  Never alter yourself or your style, because it is amazing what starts happening when you accept 'you' as you and start rolling with it.  All sorts of 'you' start coming through in a very organic and honest way.

In design college I remember I had a hard time because I wanted to draw and design like everyone else. I had a particular design style, yet would look at my neighbor and wished mine looked exactly like theirs. I realized that was the thing that was blocking me. It wasn't until later that I understood the power of being yourself, and that I too have my own style and emulating anothers is just holding down my own potential. It wasn't until then that all sorts of creative parts of myself started emerging and slowly I've been slipping into who I am.  

Once you start following yourself doors open and yourself is revealed to you.  It is very important to truly be who you are, and if I had any advice for any design student, or anyone, it would be that. Your perspective is unique and the world WILL find a home for you. It naturally happens this way.

Random 3AM

It's 3:30 am, so thought I'd do a very short post. I'm lying in bed with my iPhone in hand. I've been a bit MIA here, but assure I'll be back in full force once I get some personal projects completed.  

I have a huge bank of posts, illustrations and video just waiting to be uploaded, but time is always a factor. I'm working heavily on my portfolio and close to the finish line. I'm doing my best to drown everyhing else out until I am finished.  Maybe I'll post a few of the portfolio pages here.  

So, until then I'll try and do these easy breezy quick updates.  

As I've already established, I'm awake. Actually went to bed fairly early, but always end up waking up.  I find I wake up to an idea and need to jott it down.

I'm lying on my back tap, tap, tapping my iphone with one finger. Holding my iPhone this way makes it feel like a 100 pounds. It is hard to hold up even the lightest of items.  My finger gets tired and both arms feel strained.  As it progressses I hate how I can feel how weak my legs feel even when I am doing nothing...even when I am just lying here.  My legs feel numb and tingly. The muscles feel like they are hardly there, but voiceful just enough to express their depletion.  

Hardly a part of my body, I feel like they (legs, arms...etc) are fighting to leave the 'team', they 'just want out', they cry...they want nothing to do with me anymore.  

During the night I need to manually turn as my legs don't move on their own like a 'regular' person's body does.  Pretty much while I sleep I lie perfectly still until I'm forced to wake up and reposition my darn body.  I try to move my legs by myself, but many times I have to poke Jason to help.

Because my legs don't move on their own they get very numb and I need to constantly move and reposition to stretch them out and increase circulation. This combined with an over-productive mind makes it hard to sleep sometimes.  I hate the feeling of numbness and I hate literally feeling the atrophy in my muscles.  At least I still have feeling, right? There is the bright side. As the condition progresses the time it takes for circulation to waiver or parts of my body turning numb decreases. Seems like it happens quicker and much more frequently. My joints have really suffered, too and it's pretty uncomfortable. ALL the time. I'm always in discomfort.

Just to recap this weekend.

Well, the holidays are coming up, so I've been prepping for that. Around this time of year I always think of my grandma.  She passed away 3 years ago.  She was Thanksgiving and Christmas to me...to many of us.  I believe that is one of the thing I adopted from her is my love to have people over, especially holidays, and have as many people as possible.

Whether I know you or not--anyone is welcome and as long as people are together and happy that's what matters most.  I like the idea of making sure people have somewhere to go. When I first moved to LA many of our west coast friends had no place to go for the holidays as they left their family back in their home state. I feel it's important to make it a policy of open door, because many people don't have a place to turn to.  Afterall, isn't that what the festivities is about? Sharing?

Family is not just biological and it should be available to all those who need it even if it is only one time a year. When I was much younger, my grandma's house was filled with people and that's how she liked it. Welcoming of whomever, even if she didn't know you. I noticed that. I liked that.

What else...hmm, this weekend I got a super short hair cut!  I guess you would call it a Pixie style cut. I like! Anything that mixes things up I'm a fan of.  We also visited 'Pixar: 25 years of Animation' art show at Oakland Museum. Very good show. Much better than expected. So much talent and more importantly the passion and vision is overwhelming. I love Lassiter's personal story of his journey. Attracted to Disney's story telling in classics such as, Dumbo, Bambi, it fused passion in him and he ended up working at Disney, his dream job. He ended up working there, but later was fired or let go.

Why? Because at the time he was working on the animation, 'The Brave Little Toaster' and in his free time he worked on a CG version of it.  He believed this tool, this technology was the future, and so he pitched it.  After the pitch Disney looked at him and said he could leave and that this technology, if it wasn't going to make them more money or the process faster, was no use to them (Disney), so they let him go. It's interesting when companies don't want to change or are afraid of anything that is different. No one wants to change.  When they cant see past their door step and don't want to accept those that don't fit into their mold they degrade, and rationalize, the passion the person being too wide-eyed...too 'green'.  When they do this they lose so much of 'what could be'.

People do this, too. "If you're not a part of my mix then I don't want to take the time to know you or share anything with you".  

Even If CG was sincerely silly and would never take flight in the production world, Disney (any company) should have rewarded and harnessed that type of passion, because it would inevitably be useful.  You need those types of people around. The types of people who work not because they think they are smarter, better than others or trying to get ahead, but because it stems from genuine passion.  Vision and passion are things that can not be taught and very few possess this quality. But, he (Lassiter) had the passion and now look at what he's created.  No opportunity is ever your last and Disney most certainly was not the end for him.

"Art challenges technogy, and technology inspires art"

Well, this ended up being longer than a quick post. Good morning!

Note to Readers

Some people have asked me why images/videos don't show up in their email notification after I've posted. Images and videos from my blog won't show up on your email, so you probably have to click the title of that post and it will take you to my blog.  I think you can check 'enable images' on your email settings, but probably just best to visit my blog. Happy Sunday! Going swimming and then Christmas shopping. 

Swimming Is Cool

Weekly swimming at the local pool and it is always with tons of elderly. All you need is vodka and you've got yourself a party.  

As I mentioned earlier, I've been swimming every weekend. Swimming is the best exercise as gravity is not working against me.  I usually see the same patrons at the pool and they are usually all senior citizens. It is cute to watch them, because they have their own social circles and cliques and it feels like a Cheers (wet)bar where 'hellos', 'you made it' are exchanged.  I am usually the youngest. 

It is cool to be able to do all sorts of leg tricks that I can't outside like, lifting me leg and walking without the assistance of Clarice II, George, Charlie or Rolly (Kamjam mobility team; cane, braces, chair).

Plus, in the pool I am able to karate kick Jason ;).  I can do flips underwater, too. It feels wonderful to be able to walk in the water and in a way nostalgic. I am visiting my past and it is nice.  I definitely feel better and more energetic after the fact. If you are a patient, I highly recommend you hop on board the swimming train.  Check out your local schools, as they may have special time slots for seniors/disabled and much cheaper than your YMCA. The local pool I visit is a warm pool, so it's very easy on the body.

Inspired Wheelchairs

Rolling and jamming around the city I noticed alot of wheelchairs out. Ughhh, why are wheelchairs so horrible looking?

I swear, one day, one day I wanna make those things look sweet, and THEN people will be staring at me not because I have wheels attached to my butt, but because I look so darn cool ;).

I definitely see a rising trend in focusing on individual mobility and making it better and cooler. Which is smart because disability rates are rising and people are living longer, thus more need for assistance. It's an industry that hasn't really been touched and its potential not sought after.

I definitely see more conceptual art for the medical device industry. Car companies, such as Honda and Toyota focus studios for R&D in individual mobility, though some more shiny than practical or functional.  I see alot of conceptual -  shiny art, so it makes the company appear innovative, but I'm waiting to see for this flare to be realistic enough to actually hit markets for people who actually need them. There is definitely so much potential awaiting. Hey, if people have to live in these things on a daily basis for the rest of their lives, there's no reason why it can't be inspired. I have alot to say about this subject and what one day I hope to do in this field, but I am tired, so I am off to bed.