RoboKam Delivers a Package

The other day it was Jason's 30th birthday, so I drew him up this little comic. We are not into giving store bought paper cards to each other mostly because they cost $5 a piece. No way...no thanks.

 'Robokam' was coined by my upstairs buddy.  The second week we moved in she saw me use one of those helping hand claw things to pick something up. They were installing a ramp for me that same weekend and so she etched 'Robokam' into the wet cement and...well...now it has stuck.  

Jason loves robots, so it seemed fitting to draw him a robot birthday card in a very 'Kam' fashion.  Notice my one very long arm. That is my cane arm, of course.

When I delivered the comic strip to Jason my note said, 'Thanks for sticking around through all my bright ideas'.  He follows all my projects, ideas, overactive dreaming mind, scheming and is always very patient through all of them :).  

I appreciate that he is supportive of me following my ambitions. We try to be that for each other and not say 'no' to an idea even if it could be risky. You need that.  I am all for saying, or considering, 'yes' if it leads to an experience whether it is for myself or him.  He would say that I am the more adventurous one and willing to take the risk.

For example, leave a perfectly good stable job to move to a a less stable job, yet a dream job that could pay off in the long run.

Sometimes, if I propose something he will sometimes come back at me with logic and reality, even though I have already thought out all those practical points. I want to take the chance anyways.  

I have a certain amount of feeling, if you sometimes take a risk it will lead you to unexpected and great paths.  

I said it in the previous post, but my life is a series of situations like that in my life.  All you can do is take the step and see what happens.  Like everything, it is a fine balance. You can't be too reckless, but you can't be too safe. I'm a combination of organized practical realism and risky spontaneous idealism.  

My move from Michigan to LA 3 years ago was completely impulsive. I virtually knew no one, had a disabling condition and yet moved anyways. My did brother live here and Jason, just an old classmate at the time, offered to help me.

I decided west coast was where I would find all the opportunities, and now look at everything that has happened in my life.  I do not regret that move one bit. Our recent move from LA to SF was kind of impulsive, too. I left a perfectly good job, for more reasons than one and moved onto San Francisco where Jason found a job. All signs probably pointed that the move was not needed, but it seemed time for him AND for myself in my career.  I needed more growth and so did he.  

You need someone who will support your dreams and allow you to grow.  To know when it is good to be a pair and when you need to be an individual.

Happy Birthday, Jason!!! Love, Robokam

I've Fallen and I Can't Get Up...Again

Well, here I am with nothing to do but lay on my back gazing at the ceiling while realizing how dirty my floor is.  

Gosh, Pippi and I shed alot.

I fell about an hour ago and now I wait for someone to gallop in on their white horse to rescue me. I must admit it is no longer a surprise when I fall, though it still does jerk a couple streaming tears from my eyes. I guess that part never gets old. The frustration part.

So, I figure I'll make use of my time and document this fall from my iphone and then read a book after. It's more of an inconvenience than anything because I have a long list of work to do. I haven't actually fallen in awhile.

I love that while I fully know I can no longer get out of these predicaments by myself, when I fall I immediately strategize a new way to get up by myself and then attempt it. As if I can outsmart these legs that don't bend or work anymore. I build structures with chairs, tables, etc, but my time would be better used in making one of those living room forts. No dice. No clever structure can get me up.  

Pippi circles me with worry and confusion for awhile and then she gives up and retreats into her dog bed and sleeps. Thanks, Pip. You are lucky I don't have pen and paper on me or else I would sketch out your cowardly ways. Where is my super dog when I need her? In fact where is the super Kam I dream up when I need her? She could most definitely get me out of this.  

Jason says he can't imagine me as not ever being the adaptable type. HIBM certainly contributes to teaching me to just go with "it".  I am on the floor and there is nothing I can do but make the best of it. Adaptability is a very important life skill, not just for HIBM, but in general. It is another form of problem solving, right?  Being a control freak and planning out everything according to your own will -- hmmm, life just doesn't work that way.  

No person is exempt from unexpected circumstances or these little testing nuggets from life, so we might as well start training to handle the unexpected, unrequested or unplanned, no?

There are things we just can't control and trying to control it just makes ourselves nuts and possibly others around us nuts as well. If you can adapt to your surroundings, you can get through anything.  Most of the time when we are willing to bend and let go -- new surprises, memories or opportunities arise from it. I feel like my life is a series of these instances of bending and so many unexpected paths and crossed paths have been created as a result. 

The More You Share, The More Others Share with You

Today was a homemade chili and cornbread kind of day, so I just finished making a huge pot.

Autumn is here. I have never been good at making suitable quantities - which is funny, because it is only Jason and I. Every time I cook I could feed eight people at least.  Quite possibly this over cooking is me secretly hoping that if someone shows up at my door unannounced at least I will have lots to share.

I also just finished replying to a ton of messages that I have been meaning to reply to. That happens. I sometimes receive a hundred non-work related messages a day and at times I just don't get back to all of them. Eventually I do, but it sometimes takes awhile, especially if it is one of those "intro" emails where I need to share the entire gamut of what has happened.  I am online  and connected all the time. Aren't we all?  

Sometimes I hate that and not because I don't want to help, but because so much of "it" is sharing.  Alot of spreading awareness is constantly being connected and inviting people into your life.  Sometimes, I hate that I am next to my phone all the time...it really looks like I have nothing to do but be online :P.  But, that is how things are done in this era.

I just finished replying to a couple messages that have been sitting in my inbox for a couple months. I find the more you share, the more others share with you.  

I receive emails from people I don't know, new patients, and non HIBM patients, all the time.  I've done several speeches about my condition; some at work, some in conferences and it never fails that at LEAST one person comes up and says "I am or I have an aunt, child, uncle, sister, brother, child, mother, father, friend...that is struggling with...(insert word here)."   

Here on my blog I talk about HIBM, but the struggles are not just about me and I am not the only one struggling. We all do, no matter how big or small. We are just vessels constantly bumping into each other and most of the time know nothing about those we bump into.

Think of how many people we pass or even know in our own personal life that we never take the time to "see" or understand where they are coming from. We assume and we don't spend the time.  I feel we are here to share, because honestly what is the purpose of our life if we don't?  We can't just be here for ourselves and ourselves alone.

With that, I just finished my pages of reply to this person that I have never met in my life.  I re-read their email and this individual's journey of THEIR condition, unrelated to HIBM. I consider it a privilege to be able to be, in some part, a part of the lives. No matter where we live in the world - "we" are never dissimilar from each other and the line of connection never too short.

 Well, time to go inhale this chili mess fest I created. I guess we will be eating it all week long. ;)

Food for Thought: My Mind Doodles, Does Yours?

Thought I would post some food. In my attempt to eat healthier I've been trying to cook healthier.

I made this dish; pan seared salmon with some candied lemons and pickled persian cucumber. I dredged the salmon in a little cornstarch just to see what it would do. And, heirloom tomato and peach salad with basil and mint. You wouldn't think tomatoes and peach go together, but they do. The sauce is just some olive oil, soy, balsamic, orange juice and lemon.

I really do love to cook. I think with the holidays nearing I get really excited with the thought of being able to cook for anyone who ends up around my dinner table. This is me appreciating what I have while I have it. Last year was the first year I hosted Thanksgiving, a tradition that was my Grandmas. She passed away three years this Christmas, and so did alot of the traditions.

That, combined with the fact that my family is all scattered, holidays are just not the same. That makes me sad. And so every year, at this time, I think of grandma and those holidays that happened around her table.

Last year I cooked for my brothers and a bunch of friends. That was my very first holiday and it was all mine. I think at that time I realized there may be a time when I will not be able to host holidays again...and sometimes this makes me quite sad. I want to cook for my children and my children's children. I want to welcome them in from a cold day with warmth. So, I try to enjoy it while I can and put as much love as I can into it, because once it is gone, it is gone. It, meaning not just my body, but time.

I think I have already posted about why I love cooking so much. One, being the obvious, is it is centered around people, and two, it is creative.  

Cooking is slightly different than say how I would tackle a design of a product or branding a company, for example. Cooking is physical. It is repetitive and I know how to tackle it from any angle without even thinking. I don't think while I cook, I just do.  

But, when I am designing, whether a product or dreaming up a vision for a brand, it takes a little more effort. Of course it involves me putting a pen to paper and physically drawing, but for me design is more inside my head and I am charting mentally...creating spider webs and interweaving a broader scope. It is a cerebral exercise and I am so very thankful that my career is centered around my mind and not my body.  

I graduated from College for Creative Studies and majored in Automotive Design.  Since graduation I have added areas of "design" interest to my repertoire. Product, Graphic, Illustration, Web and the last few years I have really gotten into branding. There are so many components when you design something like a product, which is probably why I have gotten into branding; overall vision.  

If you tell me to design, say a shoe, I can't just design THAT shoe. I need to think of its broader scope. I just can't help it. It gives me a starting point, the start line preceding the finish line. It, design/art, is logical yet organic. 

A genuine expression of oneself is art.  Forget all the fancy paintings and hall of fame furniture pieces as being the representation or the mascots OF design. They are historical and meaningful, but so is everything that never sees the light of being a headliner in a textbook or paper.  It comes in all forms, from the experienced "artist" to the "non".

When Ideas Dance, So Do I.  I did this little 'trapper keeper' doodle. A ramble of thoughts spilling out of my head. I may not be able to physically dance, but my mind is a keyed orchestra and my thoughts, the entangled dancers.  When sketching this I actually was thinking of the movie Forest Gump. When Gump is younger and dancing in his restrained leg braces -- you know, right before Elvis steals his moves?

I added edamame in the sketch because I had a little situation with them today. 

Lately, I've been eating salads and boiled eggs for lunch. I am also way into edamame. I can buy the ones that are already shelled or the pods. I choose the pods because I figure it is good hand exercise to shell them myself.

When I make my lunch I have to strategize how to get the food from my kitchen to my desk. I usually use my rolly office chair, place all the items on it and then push it to my desk. I dropped my package of Trader Joe edamame on the floor. Luckily I have wood floors, so I took my cane and slid it across the floor like a hockey puck. Unfortunately the hockey puck met a bump and out came all the edamame...awwwww...noooo!.  

I can't bend down to pick them up, but needed to get them off the floor before my little Pippi came. She too LOVES edamame. So, one by one I pushed them across the floor towards my desk. This way I can sit in my chair, lean on my desk and safely bend down to pick them up.

Yes, there is strategy in every day. I felt like I was playing shuffle board and while I was picking them up one by one, since it took so long to do so, I imagined an edamame city and what that would look like. Buildings, cars, people, pets, all made up of edamame. A world made up of edamame. Could be fun. Got lost in the idea. Perhaps I will sketch it out one day. 

I've been working on a lot of design projects recently and nearing the end of my portfolio.  When it is finished it will probably end up being around 60 pages. 

It is time to get back out there. I need it. I am slave to human interaction and the magic that happens when ideas are bounced around from person-to-wall-to-person. Thoughts jumping like a ping pong machine.  Since leaving my LA gig, I've been consumed with ARM stuff, personal design projects, alot of freelance and in the middle of all that, dreaming up the company that I one day want to start.  I've also been watching alot of independent movies and reading alot.

My most recent book, a book I had read before but never appreciated like I do now, is 'The Diving Bell and the Butterfly: A Memoir of Life in Death'.  

Jean-Dominique Bauby, the editor-in-chief of Elle magazine, suffered a stroke and lapsed into a coma. He awoke 20 days later only to realize he was left with a condition called locked-in-syndrome, a condition in which the patient is aware and awake but cannot move, nor talk due to complete paralysis of all voluntary muscles in the entire body except for the eyes. The entire book was written by Bauby blinking his left eyelid, the only part on his being that he could move...besides his mind.

The average WORD took about two minutes to compose.

Reading his book, I can hear is voice. He has a strong one. The movie is equally tear jerking. I think it is important to have a voice, something personal and sacred to yourself. Sharing your own voice, yourself and your perspective from your very own experience.  Bauby saw the problem, experienced it and then set forth to do something about it - even if it was just him blinking his eye. The book is an easy read. Only 120 pages. I read the whole thing in the bathtub the other night.  

My current book is Kurt Vonnegut's, "Breakfast of Champions'.

No mention of Wheaties anywhere. Slightly disappointed ;).

Shoes Really Are a Girl's Best Friend

Can we talk? (No, I'm not Joan Rivers)

Today I was on some random street and popped into some random boutique and found these shoes and I was ecstatic! They are the coolest shoes I have. Sad, right?

They are super flat and light. I like that they are not plain black. They fit all my requirements and very comfy. I was deeply excited. Now before you start thinking I am typically girly, the excitement doesn't really stem from that.

With HIBM everything has to be constantly adjusted...everything! Not only your surroundings and adapting to your body, but yes fashion, too. Now, I am no fashion plate and I never have been. I like it simple and easy and don't want to overthink what I am wearing. I also have never, never been into shoes. I never had the temperment for shoes and getting into fashion. Perhaps I am a lazy girl. 

Below are a pair of shoes that I hate and yet I have had/worn them for nearly 8 years...nearly everyday. Why? Because I am committed to what commits to me and boy these shoes commit.

I'd like to explain what is required to walk everyday. First, I normally try to wear clothing that is light, thus less weight for me to carry. This is the great thing about being on the West coast is coats are not necessary. Every Christmas when I return to Michigan, my hometown, my winter jacket feels like I am wearing a car on me. So heavy and bulky I can barely walk...but I digress.

Now shoes are really important. I wear orthotics (leg braces) and shoes are very limited when wearing these. I can't wear high heels or anything with any sort of heel. Though, I don't think I ever was really into high heels before--like Jimmy Choos ( I had to look up that so I knew a shoe brand. Pathetic). The shoes need to be flat and requires a back strap, front strap for ankle and some kind of straps or material to hold my toes in this way when I walk the braces are not slipping, as braces only have a shin strap for attachment.

Now, pretty much the only shoe I traditionally could wear would be tennis shoes. I personally don't want to wear tennis shoes every day, so I wear these ugly sandals nearly every day. These are something like my orthotics, except mine don't have a pivot at the ankle and I have two braces not one. I am not a pirate for gosh sake. 

My body gets used to a certain balance and when I change anything, like shoes, my body has to adjust to those shoes (even the most minor differences) and then the shoes have to adjust to the routine terraine I walk every day.

So, if I wear these sandals one day and then wear a different pair the next, my balance needs to adjust each time.  My body is very sensitive. You know how they say when you lose a sense, another sense is heightened? My body memorizes the slightest inclined, declines, sidewalk cracks and it recognizes change.

I also need wide shoes and shoes that don't weigh alot....so pretty much my predicament is I hate shoes and honestly can't be bothered about trying on thousands of shoes to find one that may work...this may be the laziness with fashion I spoke of earlier. I guess that is the part of my life that I am least concerned with. So, these sandals below have been re-threaded numerous times, because I just can't quite part with the utter reliability they come with.

These were another pair of shoes I found a few months ago. This year must be my lucky year. I post them, because I know I am not the only one with this problem. These are cool because they are like loafer-ish, but they have metal grommets, so you can lace anywhere you want to on the shoe.  I wrap them around my braces and tie them ballerina style. They are also flat and super light. The are  Simple Shoes. 'Shoes for a happy planet and a happy you'. Bonus, they are sustainable.

Me House

To make up for the lack of writing lately, I did another illustration.  

In my previous post I described the current stage of my condition and that the weight of my body feels like a house on top of  twigs, my legs. I thought this would be fun to illustrate and I immediately thought of Shel Silverstein, an American poet and author of children's books.

These books, like 'Where the Sidewalk Ends', I read as a child in the library and at the bus stop. As a kid I liked his odd and quirky style and the way he uniquely explained situations.

In my effort to try new illustration styles and change it up, I wanted to do this drawing as a nod to Silverstein's style. Through the last couple months since I first started illustrating, though not my field, it has definitely been fun, and I find similarities with this form of art with Industrial and Graphic design - my formal training.  

I think that is what I find most fun about art, and all things really, is the searching for the parallels, connections and then communicating through it.  Creativity is in everything. Everything. I think most people misconstrued what 'creativity' really means and confine it to just "art" when in fact creativity comes in all forms. I digress. again.

Today, I had severe trouble taking off my shirt. Took me a good four minutes to pull it up and over my head (I would be a terrible date).  It was also the first day that I didn't feel I could drive and I was completely bummed. I love driving. When I lost the ability to run, driving became "running" to me. HIBM has practically taken my legs and now it wants my arms and hands, too? 

I am imagining what HIBM looks like and had an idea of personifying it, so I can share the inner monologue I have with it on a daily basis. I should draw that up. Perhaps HIBM is a misunderstood monster or creature...perhaps "it" has a thorn in its foot and is cranky and irritable...whatever the case, I wish "it" would stop.  

I wish to keep my arms and hands...at least, at least let me keep those...

Please, Please Come Back

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Goodness, it has been awhile since I've posted here.  I haven't been in the mood to tackle the big task of documenting my two weeks in Korea and Thailand but I will...soon.

Meanwhile, I figured I better come back with a new illustration. This is my first scenic illustration. I kind of used a combination of textures and patterns for time and efficiency's sake. I think it explains my current situation of feeling weak post trip, but really my general feeling of wanting something that is slowly and assuredly slipping away.  

As I look at my depleting body all I sincerely want is for it to come back and no amount of acceptance or optimism could ever erase the evanescent fluttering and sincere feeling of wanting something back. 

Above are a couple pictures from my trip. In Korea I visited the orphanages I lived in up until the age of four. I even had the opportunity to meet my foster mom, a woman who despite fostering children for almost 40 years, vividly remembered me.

Thailand was simply wonderful and beautiful. In these pictures, and the numerous pictures that I will post later, I look well and you can't visually tell anything is "wrong".  It all looks effortless, but my body felt terrible most of the trip and with every year that passes traveling becomes harder.

No position; standing, sitting, laying down, is ever comfortable, but these issues have to be overlooked when there is life to live and I feel the efforts are worth it.

The biggest post trip update I have is that I've been trying to get my body back into the routine of walking. After a week of being home from my trip I knew I had to return to habitually walking those 62 steps to my car.

The 62 steps that I dread everyday. I'm definitely struggling right now. I want to be able to do it, but my body does not. Whether I 'want to' or 'not', and it is 'not' these days, I have to keep walking daily. 

My body has my constant attention and it is the things that seem so minuscule that are so very epic to me and my daily life.

Since coming back from my trip I have been trying to get my body back to a walking state. In Korea and Thailand I used a wheelchair for the entire trip and did very little walking. My body adjusted to me not using my legs and I have been fighting physically and emotionally just to get them back to where they were before the trip.

All I want is for it to please, please come back.

Last week I texted Jason, my husband, and shouted, "I walked to my car all by myself!"

On this particular day I managed to stumble to my car without help. It is frustrating that these little accomplishments can consume so much of my day but nevertheless you have to take your victories where you can, however small or large. Small or large is perception anyways. Increments of measurement have a different meaning to me and the small is the big.

That was the only time I made it to my car and the rest of these weeks have been a series of interactions with strangers and neighbors and requesting their help in my effort to continue to walk outside of my house and to my car.

September 22, 2010 I return from my drive and there is no one around and so I wait on the sidewalk for any passing person.  An older lady with salt and pepper hair carrying 2 bags of groceries and wearing a purple corduroy jacket was walking towards me. I asked the stranger those words that are no stranger to me, "Can you help me?" 

Her initial reply was through her face, a look of confusion and why? As I explain and point to my cane, her aha moment turned into a smile and her lending arm got into position.

I grabbed onto her shoulder and for those 30 steps we talked and introduced ourselves.  My hand rested on her faded purple corduroy feeling the warmth and softness of her jacket. "This jacket has seen some years" I thought.

By now sy steps are a 1/3 of my usual steps and my legs feel like they are ready to collapse. They feel like twigs and my body, a house.  

I arrive at the gate, say my thank you and good-byes and do my best to stumble back into the house.

September 23, 2010 I arrive home and my legs are so weak I know I shouldn't dare try and walk those 62 steps alone. Again, I wait near my car for any passerby.  I see two men walking towards me engaged in a conversation. I wonder if I should ask them, but decide not to. I figure I should try to do it by myself and I walk a few steps away from my car. This was a mistake for now I have nothing to hold onto, and now I am just some weird person standing in the middle of the sidewalk.

I try to will my feet to take a step, but my body is too afraid to move and so I stood there frozen for 15 minutes looking for anyone to pass by…My legs might as well been roots in the pavement. They wouldn't.

Waiting…waiting…my legs couldn't stand anymore. 

The two men that walked by earlier return and this time I ask them for help, "Of course. We didn't realized you needed help. You just looked so cool standing on the sidewalk like nothing was wrong." 

As they helped me and watched me walk I could tell their thoughts were in confusion. How could one single step be so hard? How can someone so young have this much difficulty? While they were trying to wrap their brains around it we talked and got to know each other. As they left I could hear them murmur, "I can't believe it."

Last Tuesday I asked my neighbor and new friend, Caro, to come down and walk with me. I dragged my body out of the house and I could just feel my right leg wanting to collapse beneath me.

As I did my steps I held onto the house and each step became smaller than the previous. Does not matter how many times I have trouble walking, the sheer and utter weakness always falls upon me with disbelief.

The weakness is extreme and more than usual. By the time I had arrived at the gate my neighbor came down from upstairs to meet me. 

She is cheerful and bouncy and the sight of her can usually make me smile, but not this day. She asked if I was ok and I turned to her, while trying to desperately hold my body up, with my eyes welling up with tears.  "What's wrong, buddy?" (that's what she calls me). Her face looks concerned and worried. I grab her extended arm and start walking down the sidewalk and every step is followed by streams of tears.

Our 30 something steps to my car are in silence and my face, that is covered in tears, is hung low. We arrive at my car and I turn to her, grab her and sob into her shoulder. 

"I just want it back", I sobbed 

"Or as least keep what I have. I don't know what I am going to do…

I don't think I can handle this getting worse".

It doesn't matter how much time has passed since the beginning of my condition, I still have a hard time believing it.  I go through adapting emotionally and physically just in time to do it all over again for the next stage of progression. Currently, I am stuck in the middle between walking and not and lately I feel like I'd rather not anymore. I'm tired and ready to give up and I just don't want to do it anymore. After having 2 weeks of wheels, and knowing how much easier it could be, I'd rather retire this old tired body.

But, I can't. Not yet. I have to keep going even though I'd rather not walk another one of these draining steps.  

Lately, I ask, "Why?" 

I've never really done that before, because my thought has always been, "Why anyone?" Why am I special not to have struggle, so why NOT me?  

But, it has gotten more difficult and all I want is for it to please, please come back.

Everyday the realization is increasingly unmistakeable and many days I just don't know how I am going to handle it as it continues. I want it back as I experience the the innocence of a pleading child.  I'm doing my best to keep myself going, because every second I can it delays the inevitable - more serious stages.  I cry and then I stop and then I proceed and I cry some more.

It is a fine balance between acceptance and fighting back with optimism. I've accepted it, but I also don't want to give up.  

The other night I took a bath and with my legs dangled outside of the tub I looked at those lifeless legs and my weak arms and said "Legs, I have to learn to love you and we need to work together."  

Since, I've been stretching, doing yoga every morning and night and swimming on the weekends. I hope this post trip weakness will dissipate and what I had will come back.

Even though I would like my whole body to come back to me, I would be happy just for a little to come back. I have a feeling these words will continue to come out of my mouth and even smaller things will become of more significance as I progress. Nevertheless, I don't think I will ever stop missing "it".

The Greatest Part About Leaving is Coming Back

What an amazing trip!! Beyond exhausting, but beyond memorable and worth it.

It took us 26 + hours to get home and I'm very tired, so just a quick post for now.

12 days, 2 countries; made connections with strangers and old friends, reconnecting, traveled through my unknown and forgotten past, experienced tears, joys, laughter, adventure and what was already a close friendship purely through emails and shared experience became even more kindered spirits through a weekend under the blazing Thai sun.  

Not bad for booking this trip only 6 weeks ago in what was supposed to be a vacation AWAY from life. Give me a week or so and I'll post all about it. Took TONS of picture, journal and video.

Must go to sleep right now. :)

The greatest part about leaving is coming back.

Finding My Adventure

I forgot to mention but 4weeks ago, on a whim, I booked a trip to Korea and Thailand for Jason and I.

I only have a few minutes to post here as we are literally leaving to go catch a train for the airport. Above, is me at 4 years old, passport when I came to the US before I left Seoul for the US. That is my foster mother (Kim, Kyung Sook) in the picture with me. Supposedly my mom says when I first arrived in the US I used to cry for her alot...I guess was confused why she "left" me.

I suggested this trip to Jason and it began as a trip to sort of escape life and not think about everything. I felt like I really needed a break from HIBM/ARM and just have some time where I don't have to be "that" for a little bit. A trip where I have no accountability and don't know anyone, but the trip slowly turned into the idea of both of us visiting our orphanages and then turned into potentially starting an informal search for our birth family and then potentially meeting another Korean patient.  

The past 3 weeks have been about making contacts and playing Nancy Drew. Mostly, I have a band of friends that have been helping me. I read a korean publication about HIBM (called DMRV in asia) in Korea, so I located the doctors from Samsung hospital and emailed them just to see what would happen. To my surprise they replied right away and even read my blog and made comments about it.

Now, this will be my first time meeting Korean patients. Not that I am a slave to only hanging out or feeling comfortable with "my own kind" but there is something interesting about being born in another country and never really having interaction with my heritage until adulthood...same things goes for having HIBM, too.  

I actually have met many asian patients. I traveled to Japan 2 years ago to meet a patient group that I later found out was partially formed because of the things I was doing in the US -- which was flattering to say the least.  

My trip to Japan was such a memorable one and I met so many people. I heard there were 100 patients in Japan, which is alot for my condition. I went there and did meetings, speeches and though there was a language barrier -- the heart knows no boundaries.

A room filled with people going through the same experience speaks volumes. Anyways, I will probably recollect this trip in another post.

So, what was supposed to be a relaxing trip has turned into potentially finding bits of my past. It is funny, because my condition is my link to my biological past so I wonder if there is someone from my biological past that also has my condition. Even if they don't have it they would be a carrier of the mutated gene.

I really have no schedule for this trip. Since I only booked the trip 4 weeks ago - appointments and meetings are all coming up at the last minute. It is fine that the trip has morphed into a little more than outright leisure -- after all you don't always plan for your adventurers -- they sometimes find you.

This is me back in '83 with my new family. Of course I have always had curiousity of the circumstances that surrounded my birth and wondered about "them", but I never really thought I would really look for them, because I didn't think I could really find anything.

Growing up I had a pretty normal childhood and a family that loved me.  I think I went through some normal adjustment periods, but other than that didn't have much anger or resentment about being "abandoned", if that is what you would call it.

I'm sure there are remnants of how it affected me, but don't we all? 

I am not really sure I can find any information, but why not try? I must admit as this condition began I have become more curious moreso about my medical history. It is strange how my condition is my only link to that part of my past.

Besides my old faded documents, the clothes on my back and my little korean flag I bought with me on the plane (you can actually see it in the picture above) my condition is the only thing I have from before my life in the US. 

Going Back

In 2002 I went back to Korea by myself. It was a great trip and brought on feelings I hadn't anticipated. I was walking then and had just got my first cane specifically for my trip. I remember Korea was not very disability friendly and EVERYONE stares. This time I will be using a wheelchair for the entire trip and I am curious if they still stare ;).  My legs are super tired and weak right now. My body feels gross and I am hoping my energy can keep up.  I am pretty sure I will be fine.

This is Jason, my husband. He is also a Korea adoptee. That is his mother and father picking him up at the airport.  This will be Jason's first time back to Korea and I am interested to see what his reaction is.

OK, I gotta go. Sorry for this horrible ramble. This trip will form as we get there and I don't really know what to expect.  Meetings are being formed at the last minute so let's see ;).  I kinda prefer things that way. When you do to much planning things don't organically form.  I plan to keep a journal and take as many video recordings and pictures as I can. I will share when I return in 2 weeks.  Find your adventure today!

Family Visits

My youngest brother, Josh, and his fiance, Kathleen, visited me from Michigan for a week and it was great! They just left for the airport.

Of course pretty much all I did was cook. I liked having a full house. I miss having family around and having people around in general. We haven't met alot of people in San Francisco.

Josh and Kathleen are the easy going types so it was chill. Our upstairs neighbors/friends also had their little brother and his friends in town and so we did some joint parties. It made me happy because I like nothing better than a house full of people that I can cook for (wait, did I already say that?).  

I hosted everyone for a couple nights and it was very fun. I found it physically more difficult to cook for the usual large party gatherings I do, but I don't care it is all my love that goes into it.  

I just want others to enjoy and be happy -- that is why I do it. Much time and effort goes into every meal and I just want to be able to do it for as long as I can.

Let's Go Red

I decided to dye my hair red. This is the second time I've ever dyed it and my first time was last year.

First blonde and now red...I think I like the red, but let's see who has more fun (blonde vs. red ;).  

I am not the fashionable type, I never really had the flair for it, at least in my mind, but the older I get, the more I want to experiment and try new things.  It is funny, because changing something little really does change your personality. I feel sassier, as if I needed help with that.

¡¿QUÉ?¡

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For now, since I am working freelance from home, I try to get myself out of the house for a couple hours every day. I walk my '136 Kam' steps to my car and then take a little drive. This helps me continue walking confidence and these days I am trying to hold on as much as I can for as long as I can.

I have to be honest, every day when I go for my little walk to the car, I have to take deep breaths and psyche myself out. I walk the path (my walking path on video-click here to watch) along the house and then I get to the gate, stop, take a deep breath and then walk the rest of the path. There is no rail or wall for me to hang onto so I have to walk this part without assistance. Same for when I arrive home. I get out of my car and sometimes stand near my car for a few minutes staring at the path to the gate (54 steps) just dreading it. I tend to internal monologue while I walk. I cheer myself on, um...anything to get myself through.  Every step is always an adventure.

Last week I went on my usual daily walk but this time I fell on the sidewalk near my car. I think I twisted my foot slightly, but other than that nothing major was hurt except for skinned arms (Kam fact, I loved bruises, scars, skinned knees as a kid. Still do).

As of 2 years ago I absolutely can't get up off the ground by myself. Someone has to lift my lifeless body and if there is no one with me -- well, I have to depend on the kindness of strangers.

So, there I was. I was on the ground with my body hanging over the sloped angle of the driveway with my head laying flat on the ground. "Ughh, I hate this".

I lifted my head up and peaked around the neighborhood. Some landscape guys across the street looked at me in confusion and were teetering on their feet as if deciding to come or not. 

Good thing I know Spanish and so I shouted, "Could you come help me?", in English.  

One of the men darted to me. I tried to explain how to lift and we spent a few minutes dancing around the situation, but he couldn't speak english well. So I broke out my mime skills (it's ok. miming in defense, and not as a weapon, is within mime code. Kind of like Karate).  

Normally the best way to lift me is from behind under the arm pits, and whomever is lifting needs to with all their might expecting no assistance from me. 

He lifted, I fell. He lifted, I fell until we finally did it (Hooray! Just like Dora). 

The way he lifted was funny, though. He in no way tried to avoid...well, the boobs. He definitely had a FIRM and good grip. Most people that lift do their best to avoid the chest. It wasn't too creepy or assault like, he just didn't avoid it as well. Well, good for him, I say. After he got me up, I dusted myself off, got into my car and texted Jason.

Kam: Just fell. Some landscape guy helped me up. Pretty much didn't avoid my boobs.

Jason: Sorry u fell. Was it inappropriate?

Kam: Who cares!! I'm up! ;)

As I have progressed I rely more and more on help and this means strangers to. With every person I meet, whether it is in passing or someone that ends up staying in my life, I have to be the teacher. I need to show them how best to do certain things, such as lifting me. I try to be comfortable about it so that they are comfortable, because I imagine it is awkward for them. It is not that they don't want to help, they just don't know how to. I also have to heavily rely on strangers. Some are not so great, as they ignore me and walk on by, but most I've found are eager about helping someone in need.  

You also have to lose alot of your pride and modesty and go with the flow. With each new person that I come across, whether I want to or not, it is like I am quickly introducing myself and inviting them into a very private part of my life. Because of these very 'intimate', vulnerable moments it is like I am developing a relationship with each person that has helped me, and funny or meaningful moments occur uniquely with each of them --- whether it is a friend or a 'grabby' stranger, I remember all of them...

Now that it is routine to accept help, I am not bashful about asking for it. So, yea, the landscaper felt me up a little, but at least I am up ;).

When I got home the guy who had helped me was gone, but his landscaping partner, who had also seen me fell, was still working. I parked and was then anxiously greeted by his colleague who asked to help me back to the gate. I didn't fall this time, so ubfortunately for him he didn't get to accidenty graze my boobs;), but let's just say he is not the first to "accidentally" grab my chest. It happens, it is unavoidable.

I did a quick - more in depth comic this time (pic above).  I want to show myself in situations where I have great difficulty, but then my super-human self gets right back up with grace and style She has all the physical capabilities and flashes a smile. Then the comic cuts back to the reality; the reality of clumsily trying to figure out how to get myself out of situations that require SIMPLE human strength. 

The reality is, it is not that funny when I am experiencing it and at times I feel helpless and it is extremely lonely and testing.

I have to say it has been fun teaching myself how to draw characters as well as storytelling through series of images.  Because I don't have much time to labor over a drawing generally, I like to keep them simple with little rendering. When I work I like to get an idea out quickly and then move on to the next idea, which is way I don't actually care for the rendering process as much.

When I am designing a product, for example, I like the sketchy development stage the best. This is where I 'throw up' all my ideas onto a piece of paper, and so envisioning the main idea is my favorite part of the process.

So, for these little comics, I'd rather do many simple sketches rather than a few that take forever to render. I am still searching for my illustration style which will be an ever-growing one. For this one, though, I added a little color and more panels. It actually didn't take that long and I kept it loose. I also included my "scribble" page.

I scribble a basic idea on paper then bring it into digital and complete there.

A Little Bit of Old, a Little Bit of New, a Little Bit of Insomnia

It is midnight. I fell asleep for about an hour and woke up feeling bored. This happens to me quite often...I get bored of sleeping. I thought I would share what I did to keep myself entertained through the night (from 12:17-5:25am), or rather what I watched. So, as I watch a movie I will post it here. It will be as if we watched it together...awwww, now isn't that sweet--just don't hog the blankets ;).

Update: I ended up watching 2 movies, 1 animated feature, and 1 really short film.

12:17 am. I started out with World Builder, created by Bruce Branit. Shot in a single day, but took 2 years in post production, World Builder is a short 9 min film about a gesture of love by a strange man who creates a holographic world for a woman in a coma. In the end the 'world' dematerializes lasting only moments and the program ends.  The entire film (except for the actors) is computer graphics. I didn't see this before Inception, but perhaps Nolan was inspired from this?? Not quite sure. The CG was obviously amazing, but to be honest the beginning felt like a visual effects commercial showing off the capabilities of companies' computer graphics system.  This may only be the case to me, because the way the film's main character builds the world is the way you would build it in a computer...more or less.  Some of it may also be the camera angles.  Nevertheless, very cool and sweet; creating a world for someone who is not 'there' - all in 9 minutes. More short films please.  What I like most about these low budget films is hey, it shows one doesn't need to have this mucho over produced films with crazy amount of money being thrown around to communicate a message. I guess this film only cost $2000 plus  Branit's love and time in the graphics editing room.

I posted this  World Builder short film video in my "microblog" tab, so watch it---it will only be 9 minutes of your time. I haven't posted much in my microblog, but I should. I'll try. I wanted to use that tab as a place to put cool designs, ideas,  videos...etc., but haven't yet. (continue reading)

12:31 am. Then I watched a Godard 60's film, Vivre sa vie (To Live her Life) starring the very pretty, Anne Karina - love her hair, a look that is very Pulp Fiction, or rather vice versa. It's a film about a Parisian woman who leaves her marriage and children to pursue an acting career, but finds herself in prostitution. She feels these series of decisions are of that of her own free will, but is it?  Free will versus social predetermination. Like usual, he references pop culture, politics, philosophy; existentialism being his fav, etc, but it is 4 in the morning, so I'd probably have to watch it again to pick up on all the references, though not really posting here to be a movie critic. Cinematography is great and experimental much like his, À bout de souffle (Breathless). Honestly, I would have to watch both again to see which one I liked better of the two, but did like this one.

 2:09 am. Then came Independent film, Children of Invention. To be honest I was doing some work during this one and didn't watch every bit, but it is good enough for me to revisit at another time.  Pretty much an illegal immigrant mother whose part of the working poor of America. She is trying to keep things financially together for her 2 young children and gets involved in bad business ventures/Ponzi schemes which leads to her disappearance. Her two children are forced to make it on their own and the oldest sibling, Raymond,  resorts to creative, inventions and gadgets to take care of his little sister . The harsh adult world on 2 young ones...I did love the nuances of their naivety and desperation--it is endearing and cute, but kinda tugs at your heart strings. There is this one scene where Raymond blows on the credit card so he can use the ATM-as if he is blowing a nintendo game cartridge. It's funny how the mom and son are one in the same. Both are naive in different ways and both reaching out for quick fixes/schemes in order to survive.

3:43 am. and lastly, Triplets of Bellville, an animation I go back to again and again. I truly love Triplets of Bellville and really respect traditional animation and the love that goes into such a craft. The story centers on Madam Souza and her grandson, Champion; a sad and lonely young boy with deceased parents. In efforts to cheer him up she gets him a puppy, Bruno and later a tricycle. As he grows up he becomes a professional cyclist, like his deceased parents were, with grandma Souza as his coach. He later enters the Tour de France, but then is kidnapped by Mafia Henchmen. Grandma Souza, Bruno, and the Triplets of Bellville- the 1930s singers that she recruits along the way, go on an epic rescue and find adventure.  I would say the film is almost entirely silent animation which you would think would be a problem, but it is so not. It is a conscious design decision and an aged, almost retro, song and dance story telling. The characters are fun and so well designed that you can feel the character's weight and movement---like with Champion who has an aloof, long, gangly and slow feel to him.  I think that is what is amazing about animation--.to be able to achieve such realism of an envisioned character's movement style, facial expressions and overall consistent demeanor is not an easy feat and requires much real-life observation on the designer's part. I love watching Champion's body when he rides a bicycle---you can just feel his every push and leg stroke when he rides the bicycle. Anyways, a great animation, I promise.

SO, we have a mob chasing after a gangly cyclist and the mob being chased by a stocky short grandma, bloodhound and 3 leggy, crazy 1930's hall singers...a mystery man creating an holographic world for a comatose loved one... a tragic case study of a mother/wife,  with super cool 60's hair-mind you, and her descent into prostitution...and 2 cute adorable little chinese kids using invention to try and survive in an adult world...

What can we learn from all this? that it is time for bed. Good morning. :)

Oh, and Jason slept through it all. I could light a firecracker and he wouldn't wake up ;) Incidently, it is almost time for me to wake him up for work. Yes, I make sure he wakes up every morning.

Power-Up with Love

I tried to approximately recollect when particular and significant loss of function has taken place over the course of my condition.

I jotted these major milestones into a simple graphic timeline to help visually tell the story.

After completing - it was even strange for me to see it all in one image. The progression happens so slow and so I am not always aware of it.

I was thinking of video games (and how cool 8BIT is ;) and in video games you collect things, make decisions, explore, discover, gain energy, lose energy and progress through levels, and so for this post I am represented as that 8 BIT stick person ;).

Some of these stages have been truly humbling and there are times when I have learnt to just let go of myself. Through each level I progressively debilitate; I lose my physical capabilities, but also gain, too. At each stage I have gained more and more understanding, perspective, empathy, courage and that is my "heart meter".

Sometimes this experience makes me want to draw inward and I don't want to share and be open. I don't want to spend all my spare time working with ARM or spreading awareness about HIBM. I want to worry about me and me alone and have less accountability.

But, I can't help it and I can't ignore it. It is too humbling and revealing to do that. Growth is not always easy and I feel it pulling at me even when I don't want to join. It is an emotional, sometimes painful, part of my life and the struggle seeps deep inside.  

Because of that, because of the constant loss, it is that that compels me to want to share, to be open, feel empathy and to push myself.  I can't help but put empathy and passion into EVERYTHING I do, because I REALLY DO care that much, because it REALLY DOES hurt that much. It is the purest emotion, besides love, that I can feel.  

It is love and lessons learned that drive me forward and why I do the things that I do and part of why I am who I am.

Complete one level and then there is another. 

"It is something that grows over time...A feeling in the heart that becomes stronger even stronger over time. The passion will soon blossom into a righteous power and through it, you will know which way to go"  

--Zelda, N64 videogame

"Time passes, people move. Like a river's flow, it never ends. A childish mind will turn to a noble ambition. Young love will become deep affection. The clear water's surface reflects growth. Now listen to the Serenade of water to reflect upon yourself."

--Zelda, N64 videogame

Videogame, Legends of Zelda, was created by Shigeru Miyamoto.  Much of his work like, Zelda, Mario, Star Fox, Animal Crossing, were inspired by his exploration bouts as a child.

As a young boy, I guess he loved to explore secluded lakes, caves and hillsides in his hometown, Kyoto Japan.  Apparently he came across a cave and after much hesitation he went in, with a lantern as his guide, and this exploration is what inspired the Zelda concept.

See, you never know where your passions or life experiences can/will lead you. Happy hunting.

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Super-Human Strength

(I drew me in a different style. I'm trying to practice drawing different versions of me ;)
As a young child we perceived our parents as the authority figure. Though we didn’t always agree with them they were the ones who had it all together, knew the right thing to do and had the maturity of a wise one.  But as we get older we see them more as people; with their own bag of problems and insecurities. Nothing really changed. It was always there, but we weren't equipped to observe them and we didn’t have the experience to see it.

We want to see things the way we wish they were, because it is far easier-- to see people as Super (emotionally) Human.  We want these superhero archetypes of somebody who can do anything and doesn’t feel the feelings of insecurity that we all feel, but the reality is, is that doesn’t exist. 

The evolution of understanding of what “strong” means from childhood to adulthood changes.  When you are a kid you think being strong is always being steadfast and not feeling fear, but when you are an adult you realize being strong is having those feelings of fear/sadness/insecurity and yet still pursuing or moving ahead despite them. Physical strength is a continuous change for me and in its course the idea of actual strength becomes much clearer. I am learning and with every phase of uninvited progression - I am forced to rebuild who I am and then reevaluate the expectations I hold over my head.  When you are weak, you are strong accepting help, and love, from others in what is the most arduous time, that at moments require herculean strength.

I just arrived home from the bookstore and walked the 136 steps from the car to my house door. This time Jason was with me and feeling particularly tired I held onto his extended arm as a guide.  As we walked through the gate, and as the automatic house spotlight turned on, I was struggling and whispered to Jason,  "I'm not sure if I'll be able to keep walking much longer...". 

"Keep trying. You have to", he replied.

"I know."

It's California, but it seems chillier in the northern area, and so I took a bath because soaking my body helps a little when my joints start to hurt. My joint problem is not the result of the condition, yet I think it has developed as a result of all the physical compensating I must do just to achieve everyday things. I have to stylistically get out of bed, get into a bathtub, walking..etc. in unique and different ways and I think this adapting has lent to joint discomfort and pain. I digress. 

I sat in the bath thinking about how weak I felt today and the next stage that is not too far around the corner. Yes, I know, "Don't worry", I say to myself.  "When it comes you'll do it", but darn those corners of my eyes as they dampen again. I lay in the bathtub and my face starts scrunching up, my throat closes and the tears seem to come from my way down in my belly.  It was hard to breathe and I silently sobbed trying to catch my caverned breath.  Deep breaths..1...2...3...while tears flooded my eyes.  It was a quiet cry, the kind that comes from disbelief...the kind that comes from a hard lesson learned...the kind that comes from acceptance and yet is still painful...the kind that comes from seeing all sides of the sphere...the kind that leaves me speechless and humble in my soppy skin. Deep Breaths. 

Significant milestones of progression are always difficult to adjust to and often times it feels like the jump in weakness came from out of no where.  Canes and braces was a significant milestone, not being able to ascend curbs, no longer being able to climb stairs, not being able get up curbs, ramps and now this sensitive stage between walking and a wheelchair.  "Gosh, I'm not sure I can handle it", I quietly say to myself.  My next significant milestone is a wheelchair.  I am not being negative, just realistic.  It is hard to explain what the weakness feels like. The legs beneath me feel like toothpicks; a house of cards that feel like they are ready to collapse with any slight passing wind.  Some days are better than others.  My body does not feel like it is a part of me. It feels disconnected and there is a point where the weakness becomes unrecognizable, because parts of my body literally lose capacity to do certain things. There is no 'willing' my legs to raise and bend--like a marcher in a marching band would do. There is no break. 

Every stage prior to this one has been relatively easy for me to get through. I didn't cry much and just took it like a regular everyday life struggle as if it didn't interrupt my life at all.  But this stage...this stage is the hardest. Not wanting to go into a chair is NOT a pride or vanity thing, yet it is knowing that I will one day completely lose my capacity to walk. Once I go into a chair I will walk less and my legs will eventually atrophy into nothing. Once I go into a chair it will be an automatic chair, because I don't have the arm/shoulder strength to manually propel a manual wheelchair. Once I go into a chair, new weaknesses will surface and my arms, hands, upper body are the next in line. I hate the feeling of the physical weakness. It is not a mental weakness for I know I am pretty strong there. I usually cut through struggle, but this is surreal at times. I am slowly disintegrating and it is almost a tease how it allows me to hold on to the very tippy top of the physical ability at hand ..."I can sort of still do this thing, but it takes all my might to do this simple task. I don't understand. I could do it or do it better last year."  "Just one more second, let me keep this for a little longer. I promise, I really do appreciate you (physical ability of any given phase)."

When the image of a wheelchair comes to mind it does NOT have to do with pride or vanity. I mean, sure-I wish they were cooler looking ;), but as far as the image of BEING IN a chair--this is not what bothers me. As the years progress I have become more confident in my skin. I know WHO I am and don't care too much of what others think when they see me with a cane or in a chair. Sure, there are always remnants of insecurity or awkwardness; people who stare, people who are surprised that I, a "disabled person", is good at something, but try my best to not make it a limiting factor for me.  What IS hard, though, is this feeling of weakness.  It is not fleeting -  it doesn't go on vacation and it takes my physical capacity little by little. So what do you do?  You dig deep down to the super-human inside of you. We all have it and it waits there until it is tasked with a mission. You grieve in your moment, clean up, dig deep and then you proceed...step by step you get there. I know I will be ok, but I still cry at every loss.

I was digging through some past written journals and thought I'd post an old entry from two years ago.

Written entry from my journal, April 19, 2008

" Sometimes I imagine the pace and rhythm I would walk if I didn’t have this disease. I am used to how I walk…but. It. Is. so. slow. My mind is fast and thumping like a rabbit. This pace that I would walk, I can feel the rhythm in my heart. I'm walking down the sidewalk with my shoulder bag fling-ed over my back. Left foot. Right foot. feeling the wind on my face…hopping off the curb without a thought…without a missed beat.

I try not to miss these things, because bottom line is I am lucky. But, I can’t go through life dismissing my (difficult) experiences and the level at which they make me sad (or happy), because I am busy putting things into perspective with a comparison and contrast analysis chart. Truth is, I can’t control when these feelings of loss seep in. They change me. They are sometimes nagging…When they do seep in, I miss it. I miss everything. And as time climbs, however that is or means, the list of things I miss become longer with a growing concentration of the things that are minuscule to most, but aren't so minuscule to me.  I feel like I am dreaming and my hands are out before me. All is can see is my hands and I am reaching out to those small things. Like slipping on a pair of shoes, picking up things on the floor, sitting without discomfort or pain.

In the earlier stages of this disease I missed running…then I started missing walking freely without a cane…then I missed slipping on a pair of shoes…missing holding this pen without weakness in my hands or the fact that hanging my head over this pad of paper didn’t hurt my neck so much…smaller yet-rolling over in bed, dialing buttons whithout having to consciously PUSH them, holding a hair dryer without feeling like I am holding a brick…

As my list of things expands I can’t help but cry. I’m positive and genuinely satisfied with my life, but I cry still. I learn so much every day. About myself and others. But this will never take away the fact that it is saddening at times. In my alone, quiet moments when it catches me off guard, at my purest state, I feel like I am losing parts of myself everyday with every loss. I believe there is a gain. I learn what I can do-What I am capable of and list of ‘cans’ and ‘cants’ are hard to put on a pros and cons list. My heart feels quiet and absorbent. Through more of this journey I feel more and more quiet…listening more internally…I feel like I am pack-rat absorbing the faces of those who walk by; their issues, problems and their lives…like a sponge. "

Cooking with Kam

The other day I made Sole Meuniere Almondine w/Confit Byaldi (aka Ratatouilee).

Since moving to Northern Cali I don't really go to the grocery store by myself anymore. I should, but I guess I am afraid of falling. I mentioned before that new areas, which include new stores, take time for me to adjust to. I have to get used to the layout and every new place it's like my feet and legs need to be properly introduced so they can memorize every detail.

I have find a store, Berkeley Bowl, that I love because parking is right next to the door and there isn't curb for me to have to climb over.

Yay!!

I was cooking my Confit Byaldi and realized my eggplant was too big compared to the other veggies. Knowing that the dish took 2.5 hours just to bake, I couldn't wait for Jason to come home for him to pick up the Japanese Eggplant (more appropriately sized than regular eggplant) and so I went to Berkeley Bowl by myself.

Man, my legs were tired that day. I got out of my car and into the grocery store and thought, "Perhaps this was a bad idea to come alone."

I know I need to get out there more by myself. I think I lose confidence when I start depending on help. Currently I design from home and therefore don't walk around as much as I should. The store is approximately 250 Kam steps from one end to the other and I was pretty tired afterwards.

I came home and finished cooking a meal that was probably too time consuming for a weekday, but had fun! I also watched Ratatouilee while I cooked ;)  

Had a bunch of veggies left from the Ratatouilee, so I made homemade vegetable soup the next day. I don't know why, but I have this deep infinity for soup. I love soup.

I LOVE to cook. I suppose I have been cooking since I was young, but it was moreso baking that I did alot of as a child. I started dabbing more in actual cooking in college and would cook for friends here and there.

But, I think I really started cooking when I came to Los Angeles 3 years ago. I am from Michigan and after College, on a whim, I decided to trek out to Cali to look for career opportunities. I was staying with friends and as a way to "pay" them back I cooked ALOT for them. That is really when I started cooking and through the years I have really fallen in love with it.

I soon realized that it was exactly like a design process. I'm an Industrial Designer by education and I always say how lucky I am to have a career that happens to be something I really love and am really passionate about. Design is all about proportion, balance, vision, problem solving, execution...etc. All the things I love about the design process is pretty much like cooking. Cooking is like a mini design project for me where I get to: envision, plan, budget, execute, create proportion, layers and balance and most importantly, just like design, cooking is centered around people.

I think that is what I love the most about it - the end result is about the people. While cooking I'm completely engrossed and it is probably the only activity where my BRAIN completely shuts off.

It is similar to when I draw/design and get into that zone. I don't think about a thing and my instincts kick in.  It is not a chore to me, but a joy. I'm not trained in cooking, nor a foodie, but I think most things have a similar system applied to it and as long as you know those basic principles you can probably make the connection in learning how to do most things. 

Food makes people happy; creating community and a shared experience and when I have the opportunity to cook for others it is really me extending love. I like my house filled with people, believe in open door policy and I like it when they treat my home as their own.

It is odd, because I would say I am the career oriented type, though when the right time approaches I can't wait to teach my future children all sorts of cool things but at the same time I have these old fashion qualities, like the way I view cooking. I may have gotten some of these characteristics from my grandma. As a child I remember that her house was always filled with people and how much she enjoyed that and now I too am the same way.

As the years go by cooking becomes more difficult. My sous chef is Jason, my husband and he is my teammate when I need him and even at times when I don't. When I am cooking for a big party he is my arms and legs and I would not be able to do all the heavy work and thus the cooking without him. I enjoy cooking and appreciate that I can still physically do it in this stage of the condition. It kills me to think that perhaps one day I won't be able to cook anymore, but for now - no worries - I will continue to love doing it and simply enjoy that I can.

So, happy cooking!! May you feel inspired!

Little by Little One Walks Far

I've been busy with projects so posts here may be sparse for the next week or so. I thought at least I'd share my mood.

Today, I feel like I can do anything and everything, and I just may ;).  The weather is beautiful and like usual my mind is spinning with motivation, ideas and projects.

Whenever I think about life I'm excited to think of all the potential ways it could be filled. I want to do so much and wish I had more hands to achieve every single one of them. I hope the future is filled with unanticipated experience and adventure.

"Little by little one walks far"

Road Trip Karaoke

On our last drive back from Los Angeles (from the ARM fundraising Gala), I recorded some silliness for fun and then, well, Jason thought I should post it here.  We were very tired from the event and found it hard to stay awake on our 7 hour drive home.  Some car karaoke, and random nothingness spilling from my mouth seemed to help us out. Didn't plan to post, but why not share? 

The other day I was talking to a patient and she said now that she realizes that a cure could happen in our lifetime, she felt like she had her life back. Though I understand this feeling it also made me a little sad that they felt like their life was ever gone. I know sometimes it feels like it, but life is never gone. 

Remember, every day your life has just begun. So cheesy...yea, but true.  Sometimes I worry where my condition is going and as it progresses the reality hits more and more.  However, I think my greatest fear of potentially being in a bedridden state is that I would lose my sense of humor,  spirit, and motivation.  

It is hard to imagine that if far in the future I were ever to become completely debilitated; not able to write, type, feed myself, that I could maintain a positive state of mind and a heart full of will. The body is one thing, but losing yourself is entirely different.

It is the losing myself, and not necessarily my physicality, that I fear the most.   If I don't care about life then what good is my body?

It may seem like I am chasing after a cure, but that is not the entire picture.  Because I know a cure is achievable, and in ten years when, and IF, I am further progressed or debilitated, I don't want to look back and say I didn't do anything to help myself or others.  I am not a big fan of regret, which is why if I feel passionate or compelled about something, I do it.  However, WITH that, cure or no cure I'm going to keep going...this is my hope. I don't want to forget to chase myself,  remember to see the humor and get everything I can out of life... If that ever away that is when I would truly become debilitated. 

I think I had recorded a few hours of my random stupid "jokes"and singing, if that is what you would call it, and managed to cut it down to 8 minutes. :D 

*note, if it looks like I am being mean to Jason it is sarcasm and well, it is just OUR way. We like to poke fun at each other. It is mostly me doing the poking, though ;).