Click here to read article.
ARM is nonprofit organization with the mission to cure HIBM, the debilitating condition that I have.
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www.facebook.com/curehibm
It has been forever since I last posted, so I thought I could reconcile that by posting cute dog pics...? Can I get away with that?
Pippi got shaved the other day (left pic). Not sure why they did that. She went in with long lion-like mane, and came back to us shaved down to the skin. We only asked for a trim. She eased the harsh day by watching Bukowski's documentary, 'Best Hotel on Skid Row' (she's weird like that) and then cuddled her tears away with mom. Don't worry, it's just hair, Pippi, it's meant to be played with. It grows back.
Other than that, I'm doing really well. 2012 ramped up fast and I've been busy with work and making plans. Who knows what could happen this year.Happy New Year! This New Year illustration is a little late, but it took me awhile to get to it and then do it.
It's Kam Doll and she wants to say Happy New Year! She's been on a bit of a break...perhaps exhausted from BikeforKam 2011 and all those boys (bikeforkam.com). She's looking for some adventure...
It's the Year of the Dragon, so start acting like it!
"Dragon is the mightiest of the signs. Dragons symbolize such character traits as dominance and ambition. Dragons prefer to live by their own rules and if left on their own, are usually successful. They’re driven, unafraid of challenges, and willing to take risks. They’re passionate in all they do and they do things in grand fashion. Unfortunately, this passion and enthusiasm can leave Dragons feeling exhausted and interestingly, unfulfilled.
While Dragons frequently help others, rarely will they ask for help. Others are attracted to Dragons, especially their colorful personalities, but deep down, Dragons prefer to be alone. "
Happy New Year from GreenGreenGrass!
This is the first year I didn't go home for Christmas and so my very first not spending it with my entire family. I needed the break from traveling, but I did miss returning home to the cold midwest air slapping me in the face as I exit the plane. And so, I sat here in LA...
With more than a week off, of course I wasn't going to use it to lay around the house. I dragged my husband on a little road trip and ended up driving more than 1200 miles within a 2-3 day span through Vegas, for a day, and then to Death Valley. I hadn't been Death Valley before and it was close enough to check it out in the limited time we had. I looove unplanned road trips...driving, letting things run into you, rather than you planning what to see.
We arrived in Death Valley during that point in the day when the sky is starting to settle in, while winking at you as are reminder that the sun will soon be retiring. There's this one particular point that we climbed with me in the wheelchair. It wasn't easy, but I didn't want to miss the sunset. I wanted to see what was on the other side of that cliff point. Of course we all know, sunsets in areas with negative population are the most glorious...and so I stood under the Death Valley night sky, wildly unadorned, with color blazes ripping through the secretive sky. It was really beautiful. The innumerable stars were crystal clear. We ended up driving through the entirety of the Valley.
There's alot of things I may not be able to do or areas I can't travel through in life, but the ones I can, you can bet your botttom mario coin that I will find a way to do it and will do it. In fact, I probably drive my husband crazy by how much I want to do. I can't sit still, even though I'm destined for a chair.
When you suddenly can't do something, you realize how important the "can" is. Don't waste your "cans". Don't waste time reading about it, go see it. There is so much to see out there, and all I really, really want to do is see it all. That is all I've ever wanted to do since I was a little girl. I'd daydream that when I was old enough I was going to escape and backpack around the world...alone. I may not be able to do it exactly the way I had daydreamed about as a child, but I still want to do it to whatever degree I can.
Happy New Year! Make it count. Remember, you can do anything and everything! If you want it, it's yours.
xoxo
I've always loved the movie," Edward Scissorhands". I remember the first time I watched it, and immediately fell in love with Edward and his world, which was way more fascinating than the world underneath him. I think we all have felt like an Edward before. Growing up I never quite felt like I fit in anywhere, but that is the great thing about getting older is you realize it's not about fitting in, yet it's about sticking out.
Merry Christmas, everyone!!
I've been meaning to do this post for awhile. I mentioned awhile back that since moving back to LA I have been focusing on physical therapy. When I lived in SF I did a bit of swimming, and at the beginning stages of my condition I had been involved with physical therapy that was paid through my insurance, which means you only get so many sessions and your doctor has to prescribe a new one every time.
This one is different as therapy comes out of my own pocket. I just finished my four months of therapy and I am on a break until the next session starts. I've been doing it four days a week; 2 land (gym) days and 2 water days at a place in Northridge, Ca called 'Center of Achievement' an extension off of the well known program at CSUN.
It was great. It felt awesome to feel active and to be doing something entirely for myself. The best part was AJ. He was my aquatics partner and really, we grew into friends. I wholly appreciated the effort he put into me. He is good at what he does and most importantly personally cared for my physical well-being, sometimes, even emotionally. When he could see it was a particular bad day, even though I'd try to hide it with a more cheerful self, I could see it all over his face, he knew and would be there like a friend. He seemed to really care about what he does and would think of creative exercise routines to help build or maintain certain physical areas. Swimming was probably my favorite, because you can do things in water that you can't do on land, like walking without braces or devices. For that hour, I gain an insight of what it used to be like. Most of the time we would laugh during the session, and I would tell him how if I laugh then I become physically incapacitated. So, I would do my best to focus and often day dream, taking full advantage of this temporary, hour long of movement, as if I was fully physically functional. If I was doing the water treadmill, I would try and stay, focused to avoid the tripping and not keeping up with the speed. One of the tactics I would use is, sometimes with eyes closed, I would imagine myself walking down the street, down the sidewalk as a "normal" person. It was a great place to be...
I can't express how important it is to get yourself physically active--in whatever form that may be. Do what you can and if you are an HIBM patient, or any person with physical ailment, get yourself out there and move what you can move. With HIBM it's important to maintain what you have. Even though we can't do alot of exercise, because it could have opposite effect and damage muscle or we aren't equipped to actually build muscle, it's important to not forget about yourself.
I did. I should have been doing it all this time, but I tend to concentrate too much on others. Between the work I do with ARM, the organization that is working on a treatment for my condition, trying to be there for other patients, other people, engrossed in work...etc., I tend to forget about myself. It's a good and bad trait, I know this. I guess I can't help it. I sometimes hate that part about myself...caring for others so much. I wish I was more selfish...I wish I concentrated on me more, but like Jason says, I don't usually think, I just do. Feeling other people's pain and suffering or being inspired triggers the "doing" mode and my passion or "what can I do?" comes front and center, but in a way I've heavily neglected myself through the years. It's hard enough dealing with the loss of your body, but helping those that are trying to get a treatment to surface, the burden of constant responsibility and accountability, feeling everyone's sadness and plight--is all overwhelming, taxing and sometimes drowning and lonely, because of the lack of help in this HIBM mission. How do you help others and help yourself at the same time? I can't in all good conscious walk away, but there needs to be balance. And, that is what life is all about. Finding balance and growth. Don't be completely and unapologetically self important, selfish, but don't sacrifice yourself completely, either.
So, moral of the story? Keep calm and keep moving. It's important to keep yourself going, because once it gets later in the stages you will have wished you would have done it. We may not be able to build muscle, but the little bit we can work out with will make you feel better. The release of endorphins is needed and essential. Keep yourself mentally and physically curious.
It's easy to make excuses. When we say, "I don't have time" I think that is misused. It's not that we don't have time, we just haven't made that particular thing or person a priority.
Thanks, AJ! See you next semester.
A recurring dream.
There are more than a handful of dreams that I have had since childhood and most of them have evolved over time and all are unpleasant. I was a little hesitant to share this one. Dreams are so personal and if it fits into a certain box people assume the meaning of your dream. For teeth falling out I believe it's something like anxiety of appearance, how you look to someone else or the sense of loss of control. With sharing such popular dream themes I hesitated, because one, it's personal and two, it leaves an opening for assumption. Alas, I share, because I guess I don't care what other people think and we all have dreams that contain revealing elements about us.
I'm not sure the whole teeth thing is a vanity thing, but you never know. It's weird that it's one of those dreams that I've had since I was a kid. These dreams that I've had since childhood are usually ongoing and evolving and truly frightening. I'll save the gory details. I believe I have always had a phobia about losing my teeth. Not to the extent where I'm obsessive compulsive about brushing or flossing. I don't do that. They fall out, I chew them and it feels so real, it turns into powder and all of the above. The dream is not so traditional where it is only about teeth falling out, this particular dream has other strong elements involved. Call it that I was fully aware of people around me that had lost their teeth at a young age, including my mother, and would observantly watch as they removed their teeth at night. Call it fear of loss or whatever...I don't really care to get analytical about it or told what I need to do less or more of, I'm just sharing. I thought it would make for a cool illustration and express something different. I may illustrate some of these frequent and long lived dreams.
As I've gotten older I realize most of these recurring dreams are built around the fear of loss and abandonment, which is strange since I always thought that being adopted never really bothered me. I handled it with ease and though, like every child, I went through the stages of trying to fit in and on top of that in an all very white community, but it never really seemed to seep in me so deeply where it paralyzed me socially or emotionally. But, I'm sure it has wormed its way into my subconscious and it's there. The dreams I've had since childhood, a few of those are B.A. (before America). Before I was adopted and had a childhood in Korea, a childhood I know nothing about or even remember, perhaps has lived in my dreams throughout the years. Who knows. I try not to overly think it and I certainly don't want to waste time whining over it, because I had a decent childhood. But, alas, these dreams I've had since then kind of speak to me and perhaps would work well in illustration form since the fear of loss actually came true in a very visual and real form--the loss of my own body. The fear of loss and abandonment, I, like everyone else, hate to publicly list or share my fears, but hey, we all have them so I guess there is nothing to feel embarrassed about.
I might as well express, prior to hibm, I was not one to sit and pour out all my feelings. In fact, I hate such things and was quite the opposite. My mother would fight with me for hours to express myself...why did I do what I did, what was I thinking, what did I have to say for myself, but I would hold it all in and my lips would stay sealed. I always saw myself as extremely introverted, which is funny, because most people that know me now would laugh in my face, but I was always in thought and considered myself more of a loner in life. I'd rather keep to myself, because isn't it safer that way? But, as you get older, it's no longer about safety, I suppose. We all have a story to tell and from its angle, it's interesting and real and deserving of being shared.
Like my boots?
Here is one to explain why I am constantly cold. Yea, yea, I'm a female and females tend to always complain how cold they are. Something like, "women conserve more heat around their core organs, which means less heat circulates throughout the rest of their body." Well, I guess there is that, plus the HIBM side effect of feeling cold despite it being 80 degrees out.
Two things I love; soup and being warm. Blankets, scalding hot baths and showers galore, bring it on, because I love it and need it. My husband thinks I'm nuts. He's roasting and I'm freezing cold any time air hits me. Turns out I'm not just crazy, but there is an explanation.
Now, I'm no doctor so here is my juvenile explanation. I'm sure there is more to it, but here's the idea. HIBM patients don't have the shiver factor. Like everything, there is a purpose to every little motion in our body. Shivering is a bodily function in response to dropped temperatures in warm blooded animals. When the core body temperature drops, the shivering reflex triggers in order to maintain homeostasis. Your muscles that envelope your organs begin to shake in an attempt to create warmth through it's energy. Well, I don't really have that...some of it, but not all of it. HIBM'ers are deficient in sialic acid which causes some of the muscle weakness. Normal muscles contract, so when you work out get hot it's because your muscles are contracting heat and generate warmth. But, HIBM patients don't have enough muscle for adequate contraction, and I guess that contributes to the coldness...that combined with less mobility. The more you progress, the more coldness one experiences. While I experience being cold all the time, I imagine it's not as bad as it is for patients that are near quadriplegic state.
If you have ever had to sleep me (errrrr, that sounded bad) you would know how absolutely, unbearable my feet and legs can be. It would probably feel like you are sleeping with a dead person, I'm that cold. My feet feel like frozen blocks of ice, my calfs and legs are hard as rock and at times frozen to the bone. I know, sexy. I totally would use this as my dating profile. "Cold as Ice".
If I've been sitting for too long, and cold on top of it, my legs get so swollen and hard that I can't slide off my leg braces. At this stage in the condition I'm not as used to sitting for long periods, but when I do it can be really painful due to the swelling.
My hands are also usually pretty cold, too, especially my fingers. SO, while Jason is roasting and sweating, I am frigid and cold.
I share these things because these are little moments that contribute to understanding a condition. It's person first, and then the condition. I share not for you to feel sorry for me, feel bad, tell me how inspirational I am, get attention, because quite frankly this type of attention is one I'd rather leave on the shelf. I'm not the only one out there with a physical issue and really, mine isn't close to being the worst.
But, it's the moments, not just for MY condition, but any physical or mental condition, that exemplifies a disease, and not the textbook version. The textbook outlines, but the moments living with it are ones that you should really pay attention to. When I see others, I don't really see their condition or predicament, but tend to visualize their small moments first. Homeless. What does it really feel like to be shivering, cold and absolutely hungry? I visualize how the body may move if it hasn't eaten for days...weeks...how they must feel knowing they have no home to ever go to, how quiet their days and nights must be. Cancer. How does it feel to be told you suddenly have cancer and in the coming weeks you will no longer be living?...the fight involved, the tears, the weakness, the humility of every minor, though grand, movement. Autism. To know you're different enough and thrown rocks at, because you don't quite socialize the way all the others do. Parkinson. The frustration in opening a toothpaste cap. When you endlessly shake, yet dying for people to see you first instead of your tremors.
Going from strong to weak is the most humility I have ever experienced. Your mortality shouts in your face. In the same breath you're moving from weak to strong, because if you can stick with yourself, believe in yourself, and keep moving, there's a safety, a comfort, in knowing who you are and despite the utter pain it can sometimes cause, at least you had the experience. The experience of knowing your mortality. It's something we hate to accept or confront, because we are invincible, right? But, there is a beginning and there is an end. I think, there is a comfort in understanding your mortality...you tend not to be as arrogant, self-centered and self-important...well, maybe for some.
It has definitely contributed to opening me up.
The whole picture is great, but the details bring you home.
I seem to begin all my posts with, "sorry, it's been a really long time since my last post..."...well, I'm not going to do that this time. I'm not. Truth is, I have so much to share, in words and illustrations. I have a back log of hundreds of drawing ideas, but we all know how it is...finding the time is difficult, and finding the excuse is easier ;).
I've been doing pretty well. Really. Been very busy, in every avenue, and fighting some kind of being sick for the past 4 months. It's odd, since growing up I barely got sick. My mother used to always say, "you never get sick". I think she took personal credit and pride in that. But, I guess we are all not twelve anymore. I do get tired, more often than I'd like, part age, part my hibm, but do my best to hold on to being able to do everything and anything. I just can't give that part up yet. I feel like hibm tries to wrestle me down...aha! There's an illustration...a wrestler named "hibm", what a schmuck, and what we must look like in the ring. I'm sure my costume is way cooler than his.
The other day I fell. I fell right in front of my bathroom door, right behind my bedroom exit door. I fell straight back, flat on my back with my walker perfectly straddled over me. Don't feel bad. I'm an expert faller. I haven't fell in a very long time and it was a silly little step that threw me off balance. I was particularly mad and obsessing over that little misstep , because I had too much on my agenda that day and falling is a nuisance. A waste of minutes.
Feeling too weak to roll over and attempt the whole drama of sitting up, I just laid there.
"shit"
"really?", I mumbled.
I stared at the ceiling. "Huh, a new perspective", I thought. It only takes a fall to see something new.
I texted a friend from down the street. Her name is Sonya and I hired her when I moved back. I try not to rely on her for too many things, to keep my independence, but she helps me with little things; when I need a ride or get myself in a pickle like this day. It's been invaluable having her available and willing to come when I need something.
"I'll be there in 20 min", Sonya texts.
I soaked up the scenery of my door and ceiling. "Oh, so close", I kept thinking. I was nearly out the door. It wasn't a terrible fall. Ironically, my walking is far from being graceful, yet my falls look like a feather dropping.
Seemed like a perfect situation to make into a drawing, after all I had spent a good amount of time with it just lying there.
In my drawings my lines are ragged, a bit jaggedy. I remember my very first illustration a year ago and I was annoyed that my lines were not perfect, yet shaky, but then I realized I've never been able to sketch perfect lines since hibm began. Not even in ID school. My hand shakes a bit when I draw, so I soon decided just to go with it and let that become my style. I'm not perfect, so why should my lines be?
I imagined my door, walls and cupboards as buildings, and I was walking up in the sky. I was looking up at myself or was it, I was looking down at myself? Imagination is very important. I think we focus on grades, "intellect", education, and in school we sort of teach ourselves out of imagination, but imagination is a very important tool to have in life. Don't let go of it. I don't need to go on about that. I'll leave that to Sir Ken Robinson (author of, Out of Our Minds).
When I don't have control, when there is nothing in the world that can change my circumstance, I imagine myself out of it. After all, as much as I'd like to, I can't escape my problems. I literally cannot run away. Sure, I could avoid them, like most of us try to, because we don't want to deal with anything bad, or I could take up a vice and get lost in overeating, working excessively, drinking, constant partying , drugs, which is in no way a judgement to those that do. Every one of us has our escape routes handy, lying right next to us when we need to jump ship. I guess for me mine is creativity and "doing". I "do" to much, but creativity keeps me grounded, sane, more alive and will things possible. It's all I have in these moments. I want what I can't have that badly, that I say, "screw you" and imagine it up myself. I do, though. I want it that badly.
If I saw it exactly as it really was, such as this situation on the ground, it would only make me cry...
I know, there are always pictures of food on here, so where did they all go?
I've barely been posting any food pics, because I've barely cooked since moving back to LA. Embarrassingly, I probably could count on one hand how many times I've cooked in the past 3 months and more embarrassing I've only opened my house once to friends to participate in eating my efforts. It's been a combination of adjusting to a new home, the setting up of logistics for me to be mobile, getting home late every night from physical therapy, being busy with work and traveling back for both of my brother's weddings...and well, I must admit I'm just a little intimidated by my new kitchen.
I don't know her as well. The layout is something my body needs to adjust to. There's extra steps, wider alley, counters are slightly lower and we need to learn how to work well with each other. I need to absorb a new routine and a new way to move around her. To cook in mass proportion a whole lot of planning needs to happen and I need to gauge myself in order to accomplish everything I set out to do. Which means, space time out to allow extra time than is usually required for an able bodied person, take appropriate breaks (as you can see me sitting in the chair above) and above all have fun. If it's not fun, it's not worth it. If you really care or want something then the standards you set can be achieved...despite the struggles.
Before I left to go back to Michigan, at the last minute, we did decide to make a bunch of food and have some friends over. The great thing about the new space, and one of my hopeful requirements when searching for a home, is enough space to have people over for food. I think 20 people came over and above is all the food I made...from scratch. I made 8 homemade pizzas, 2 pans of ratatouille lasagna, piles of meatballs, huge salad...etc. At the end of it I never know how I made it through, but if you want it you have to plow through it. It was two days worth of cooking and it was great getting back into it. It was more work than I had estimated, as usual, but it's great exercise and what better way to "exercise" when it's for friends. I barely ate my food, as usual, but I did drink ;).
I always say it, but I love people coming over and I love the place messy after a great big party. It means people had fun. It's a huge project and there is a satisfaction from successfully completing it . I'll try to get back into my cooking and having people over when things settle. I miss it.
With that, I know what you are thinking..."How the hell can she cook all that but in the previous post went on how it took an hour to make a cup of instant ramen soup?"
In Big Bear. Amazing weather and colors. Lying in the middle of the forest, my first real SoCal Autumn. So still, I can hear my own heart beat and the falling leaves duet. Autumn, my favorite season of all. How can something so beautiful be dying at the same time?
Since returning from my two week out-of-town wedding fest I've been recovering. It always takes me awhile to recover after a trip. I came home pretty exhausted, sick and tired from traveling as well as all the bridesmaid/sister duties. I feel like I am back at square one and trying to build myself back up again.
It just took me over an hour to get up from my desk, go to the bathroom, make a cup of ramen noodle soup and shuffle back to my desk. Imagine spending over an hour in slow motion paranoid, with every step, that you're going to fall. I hate the feeling and dread each journey when it comes to accomplishing a task. It sounds strange that it could even take so long when I cook up complex dinners for large group of friends. For those, I have my sous chef, Jason, a routine and everything is propped up, including me, like a staging area. With someone I can create mountains of food, alone simple tasks like cooking microwave ramen and getting it successfully to my desk, is my nemesis
. It is sort of funny, but painful at the same time. I'm stubborn and try to beat "it" as if nothing can stop me, but it quickly puts me into my place. I'm stuck between sort of walking and not.Even though it takes forever to do such a small task I must do it to maintain what walking ability I do have. Iit would be so much easier to quit.
By the way, all that and the ramen sucked. To be expected, but alas the only thing I could make on a tired day like today.
I've been in Michigan, my hometown, for the past week thus my absence here. Both my brothers scheduled their wedding in the same October week. I have alot to share, but for now trying to drown out any usual stress or demands of everyday life and enjoy as my brothers step into a new chapter while basking, and recalling childhood memories, among the beautiful Michigan Autumn weather. I'll be back soon to share....
"Alot of people want distinction without risk. They want to be known for themselves without knowing themselves. They want to stick out in the crowds, but not far enough to actually be isolated. "
-Alice Neel
One of the most pleasurable experiences is being pleasantly surprised by someone and meeting unexpected people in unexpected places.
(read post...)
I completed my first week of therapy. I signed up for a four day a week semester of therapy, 2 days aquatic and 2 days land based exercise, at the Brown Center for the physically disabled in the Department of Kinesiology at California State University, Northridge.
From what I hear it is one of the best rehab clinics in the country with its 19,000 square foot indoor aquatic facility and a packed gym with every exercise machine you could need.
The week was good and it's nice to feel "active" again. I degraded alot during my time in San Francisco, and it's only coming back to LA that I'm realizing how much so. As soon as I hit the gym I want nothing else but make due with the hour I am given. An hour goes by really fast especially when it takes so long to transfer in and out of machines, into the pool, changing clothes... I have an assistant although I'm not terribly friendly during the hour because all I want to do is workout. I strap on my headphones and try to move as fast as I can and work as hard as I can.
I also completed my first week of paratransit, service that transports those that qualify in the city's disabled transportation service. That has been interesting. My first day was Monday for a 5pm pickup. I rolled out to the front of my apartment and for some reason felt jitters. As I sat on the curb I reflected back to my first day of school, holding my strawberry shortcake lunchbox and backpack and nervously waiting for my first ride on a school bus. It's weird to make connections to times that you think are done, and yet revisit you as you get older. For the elderly who age and become like children again, for a young girl in her prime to feel like a first grade school girl again. It's interesting. I have an illustration for this point. I'll post later.
(Read more...)
A little Marlene Dietrich for hump day.
"Courage and grace are a formidable mixture. The only place to see it is in the bullring."
"It's the friends you can call up at 4am that matter."
Be there for someone today. They may really need you.
On Sunday I wanted out, so on a whim took a drive out to Joshua Tree, about three hours from me. A desert seemed like a fitting place to visit...
It was my first time visiting Joshua Tree, picked it out of a hat and off I went with plans of doing some drawings in my sketchbook. I really enjoyed it...it was dreamy...another land...and the trees were like old men populating the land. Stories were told.
Whenever I'm feeling blah or bored all I want is to take off to somewhere, as much as my body will allow me, and do anything to perpetuate creative inspiration. Creativity, it is seriously the only thing that saves me. Since, I can't hike, I sought for other inspirations. It was good.
I started this illustration awhile ago. I just finished it. It is meant to be a wall piece, each one its own framed panel. Mix and match as you please.
With a progressive muscle condition there are major and minor milestones. Some that are noticeable to others and some that can only be experienced in the most intimate moments.
I can physically feel the depletion of my muscles. It can be deciphered tactilely. I can detect the growing loss through increased difficulties of both major and minor tasks, and I can even visually see the loss.
With my condition, HIBM, though a wasting condition, it's not the type of condition where the body wastes away to mere skin and bones. At least not to the extreme like other conditions. So, to most I look perfectly healthy.
I generally experience the loss through weakness, but rarely do I visually notice it on my own body. I guess because I'm with myself 24/7 and don't stare ay my body all day (I know, how could I not? ;) There are little things, like where there was once muscle, my thighs and triceps, it has degraded to flappy, fatty, droopy skin. My thighs have gotten heavier, fatter.., I know, I know as one gets older this is supposed to naturally happen, but there is nothing I can do to influence the situation, unlike "normal" 30 somethings that could hop on a bike and work it off.
There is no, or rather decrease, muscles to absorb the calories one intakes, so it turns to saggy skin. My triceps are like this. They hang lower and lower and if you feel them there is barely anything left.
A few months ago my friend was stretching me out. I've decided to take time to focus on my health. I rarely do. I rarely put myself or my pleasures first. I normally am too busy doing for others. It's a good thing, but also a mistake. I just moved back to Los Angeles and as part of my new location I signed myself up for a four day a week therapy program. Besides that I do my best to either have someone stretch me out or do my own daily stretches by myself.
My friend Joey was stretching me out and he started rubbing my hands.
"You have no muscle between your thumb and index finger" he said.
"Huh, I had never noticed that" I said while gazing at my hands wondering why I had not noticed it.
The area casted big shadows and pretty much was hallow with only skin connecting my fingers. The muscles, Dorsal Interosseus, that occupy the space between the metacarpals decided to take a vacation. They left me. No Dear John letter in sight. I was more surprised that I had not noticed it myself. That's when I started doing this drawing.
It's fuck'n amazing all that goes into every breath, every step, every movement..things that we will never take notice of or give it a round of applause while the inter workings are in play. And, how could we anyways? There's no possible way to notice every second and really appreciate the amazingness that happens inside our body, a growing tree, a flower, a random stranger's life...
I'm not here to preach about how we should appreciate everything. Yuck, how likes preach people? Afterall, I still don't appreciate every second of my life. I would say I do take notice and appreciate way more than ever, but it gets away from us.
The friends I have that really take advantage of their bodies and talents...I admire and watch them from afar...but, when I say we don't appreciate things when we have them, I don't just mean that showing appreciation is taking part in every physical selfish pleasure one can get there hands on, I mean appreciation by noticing those that don't have and extending ourselves beyond ourself. If we fully appreciate, we pass it along to others rather than going on about "how lucky or blessed I am" while pushing down the gas pedal as the light turns green, leaving that thought to the wind...
Even though I have really bad days, days that I don't think I'll be able to drag myself out of the continuous loss, and so badly would rather retreat for forever, I know I have to slap myself and not make it just about me. It's not just about me.
With that, I'm not here to hide the fact that it can be deeply saddening and there are days I feel like I will never quite get over the loss. I miss the physical movement and I know everyone else does, too.
Well, this drawing is kinda old, but just getting around to posting it. There seems to be much bathroom talk here, but don't worry, I will spare you all the gory details. We never seem to recognize the most mundane routine of our day to day - until it stares us in the face and commands utter and complete attention.
"Look at me, look at me!!"
There's been many times where I have found myself stuck on the toilet pleaing and crying to my body to, "please get up". Throughout my days I absolutely dreaded the Porcelain God and that nagging urge to peepee. I would literally be in FEAR of this routine act.
As my progression has evolved the style in which I rise from the toilet has evolved over time.
I always remember that day in Dr. Seidel's office in 2002 when he asked me, "Can you get up and down from a seated position?" as he filled out my chart with checked boxes and notes.
"Ummm, well yea, why wouldn't I be able to?" as I arrogantly demonstrated getting up and sitting down on his office chair without a blink, without assistance, without even holding onto the arm rests.
Over time that has obviously become more apparent and my getting up and down slower to non-existent.
I've adopted the style of using my hands, arms and legs to push myself up from a chair to literally throwing my body onto a table with my face squished onto the surface and then slowly, and ever so carefully, pushing myself up consciously utilizing every muscle available.
Even thinking about using a public bathroom alone has become a nightmare. A year and a half ago I could use the public bathroom at my work. If I am familiar with the surrounding, I can wiggle and create a magic routine until my body gets used to the situation. My left hand grabs the handicap bathroom rail, my right hand resting on the toilet seat pushing my body up at an angle ad as soon as I feel my hip lock, with every muscle I had left I did my best to push myself up slowly with an assistive and constant mutter, "please don't fall, please don't fall."
Nowadays, going to a public bathroom alone is non-existent. However, my home is a place I can have a little more control over and outfit to fit my body's changes. Every new bathroom I must take in account the size, what I can grab on, what I can lean on...before drafting a plan.
My last bathroom in San Francisco was pretty small, which was a good thing, because I relied on the wall and the door that was situated right next to the toilet to assist me up.
When I first moved into that place, my bathroom style was; grab doorknob with left hand, put right hand on toilet, wedge foot in between the door and wall, that way I could pull the door closed while lifting, and my foot the barrier that I could push my foot against the door and use as an extra weight to push up on.
This was shortlived. The toilet too low for me to get up by myself. Plan J.
Then I bought a plastic toilet rise that gained me an extra 6 inches of height = less height for my legs to push up to. This worked for a very short time. My wrists had gotten weaker, along with my legs, and I would find myself stuck on the toilet, alone...crying to myself and to my little Pippi in the most broken hearted sob. I had alot of downtime to think in the bathroom...I created stories in that very quiet space imagining the bathroom tiles, the light peering through the window, the walls, as something more than what they were.
I soon put a wood stool in front of me, so I could push my body onto it and lift with my legs and arms while having a sturdy table beneath me. This became a tricky scenario and each time I prayed I wouldn't fall, making it up each time by the skin of my teeth.
My latest bathroom style is this very wonderful electronic toilet lift. I didn't know it existed. I push a button and it propels me up towards the heavens in a very slow, yet breezy, adventure. Weeeeee! It's called the Neptune Toilet Lift, but here are many different versions that do the same thing, and I seriously fell in love with it when it arrived in a great big cardboard box. I wanted to hold hands with it, I loved it that much. It became more than a piece of equipment, yet a doorway to some independance and I personified him into "tushpush.2000". Christmas in July, indeed. I thought I was pretty neat stuff rising and lowering in the air. Where there is a will, there is way. Don't ever give up...
I don't look quite as graceful completing the deed as this fine elderly woman that is demonstrating it, but hey, doesn't matter how you get there. :P
Goodbye NorCal...
I know, this is supposed to be a blog about disability, and my thoughts on it, and yet there's always all these food pictures on here...how does that relate to it? I know, right? Well, it does, because it has to do with the person living out the disability and the disability itself.
Again, it's been awhile since I've posted. I'm in the middle of a move. Oh, yes, I didn't mention that. I'm moving back to LA in a few days.
As I have been packing I've come across those tucked away items that only come to light during a move. I have found alot of grandma pictures. She died in 2007. That was hard. My family was at her bedside 3 days before Christmas and I was boarding the plane trying to race home so I could say my goodbyes, too. I missed her passing by a few hours. Like many grandmas she was the family glue. During her funeral I got up and did a spontaneous speech about her. As I spoke I realized much of what I recalled was about food and my grandmas love for the open door policy as she greeted guests with welcoming arms. She always had some kind of dessert or Entenmann's in the bread box for those "just in case" stops. She grew up during a time when the family didn't stray too far and many of her siblings and family lived on the same street, the same corner or within a mile radius.
Holidays were always a big deal and her Thanksgiving dinners is something I really miss. She cooked everything and every year would have nine different pies-all homemade down to the crust. As she got older and her body more frail, she would start prepping for those holiday meals weeks and sometimes months prior. I only being able to stand for shorter periods, she would make the squash, cranberries, etc earlier and freeze it. This would cut down the number of dishes she'd have to do on the eve of the holiday. I remember she would scoot around the kitchen in her walker, and when I'n cooking I experience what I saw in her. She didn't want to sacrifice a dish so figured out ways to outsmart her body. I myself have adopted this tactic. I sometimes cook big patches and freeze it or on holidays, like the Thanksgiving day dinner tradition that I inherited from her, I may cook over an entire week-doing a little here and a little here. It cuts down the stress on my body as it progresses and can't handle as much. But, darn
As I spoke during her funeral I recalled our disabled mock races. Towards the end of her life, before my move to California, quite often I drove her to her doctor appointments. I was using a cane, she was using a walker. Neither of us were in good condition to be helping each other, but we managed. I used to joke that she was faster than I and she could out walk me any day. It's strange, at 26 years of age, to be walking behind your 80 year old grandma and realizing how similar you both look. I was getting slower and so was she. I was young, she was old.
I guess I would have to credit her with the absorption of some of my characteristics.
Sometimes I think of her while I'm cooking... I have alot of time to think while cooking. Every step in the kitchen is a shuffle and what would take others a single second to get to the fridge, may take me 20 seconds, 20 shuffle steps. When I was young I baked alot. While baking I would pretend like I was a cooking show host and mumble all the steps and what I was doing. At times a Julia Child accent would creep in...ok, I still do this today.
"You'll never know everything about anything, especially something you love." Julia Child
I could never explain how truly torturous it is at times to not be able to move like I remember and at times it stains my mind. There are select friends that I sometimes tell this to as the emotion happens. The moments I'm really missing it, I'll share it, text it, but I'm not sure it could ever be really understood until one experiences it. They'll listen, but then able to go about their life, hopping on their bikes, running, driving...the skies the limit, and I'm stuck with myself in the stillness of my body, the same before they came, while my insides come raging out in deep want. But, it's a temporary feeling... There is an innocence that accompanies it, accompanies difficult times. It strikes a chord and echoes throughout one's memories. It brings out one's innocence and vulnerability. Most of us go throughout our life speaking of all the things we can do, are great at, famous for, but very few of us touch all the things we can't do, the weakest most vulnerable , most fear driven section of ourselves. I guess in those most delicate moments I feel like a child again, an empty slate that doesn't know everything and can't get everything they want. That is the greatest way to learn, to be told that you can't have something.
"always be open to possibilities even when they may seem more challenging or at odds to what others think. This is not just for medical, but for everything."
A couple weeks ago I visited a new physiatrist in hopes to get a referral for my wheelchair. I've been using a loaner one that the company kindly gave me until I get my own. Back in March 2011 I wrote a post, "it'll be alright" sharing the arrival of the next major stage of progression...a wheelchair. It was suggested that I go into a standing chair and use e-motion wheels, a power-assisted wheel mounted on the frame in place of manual wheels. A sensor inside the wheel registers the propelling movement and activates the electrical motors.
Doing some touring and exploring of the Cali coast between San Fran and LA, and meeting really interesting characters along the way. Bleeding from cuts and bruises from getting up this rock, but the view was worth it. I look like I am sitting so effortlessly, but getting me up here, and even just sitting without falling, was a huge ordeal. Passerbys were confused, and then they would smile once they saw what was up. Perhaps they thought I was drunk, when really it was my silly legs and the like that don't cooperate. 104 degrees and loving it, my body feels so much better in the heat.
The coast is inspiring and I haven't felt inspired in awhile, so it comes at a great time.
Happy 4th! I hope you're doing something crazy, wild or exploratory, and most of all feeling a little inspired today. I can't go anywhere without it.
"Imagination will often carry us to worlds that never were. But without it we go nowhere." Sagan
I titled this one after ZZtop's song, "She's got legs" a woman that is sexy has to have a great pair of legs and then some...
Not to worry, this isn't going to be a feminist post. I'm not a feminist by any means. I think these days the best way to show you're a "feminist" is by actually using your talents and your potential, not as a gender representative, but as an individual setting their own personal goals and welcoming challenge. When you use what you have it speaks louder than the words that you use to express what you are, what you stand for or the genre you have chosen to subscribe to. I'd rather express my capabilities through action, and most of the time no one can deny you if you show the best form of yourself and handle yourself with respect and dignity. I like this better than hanging a label on myself like a christmas ornament, and pulling it out whenever the holiday calls for it.
There are always obstacles; minority, disabled, gender...the list goes on, but it's how we handle ourself and problem solve rather than blaming a system for everything we don't get...obviously there are countries and cultures that have extreme social right issues, and require great movements, but I'm only speaking of myself, my current set up and the tools I have. My disability or gender is not there so I can use it as an excuse, it's there to push me even harder and if I don't succeed in life then I am to blame. I try to see it like this as I navigate through life.
This illustration came to mind last summer. It was hot. I saw a woman cross her legs and as I subconsciously tried to mirror her and cross mine, I remembered I couldn't, at least not in the natural way. Last summer I could manually lift my heavy leg over my left leg and voila, they were crossed. It wasn't particularly graceful, more like a slow motion magic trick, but I could do it with the assistance of my hand. Nowadays, my legs have become even heavier leaving that tactic irrelevant.
When I visualized this illustration I mentally broke down the step-by-step motions of a woman crossing her legs combined with the environment or social nuance of the moment. It looks sexy and confident. I recalled the memory of when I could cross my legs and not only how it looked sexy, but that it felt sexy. The lifting of a limb that ends with a pointed shoe as the underside of the calf alluringly brushes over the left knee, right before both thighs meet, rest and conceal themselves underneath a flowy skirt.
I remember it called my attention and without thought, a natural emotion wished that my body could still do these things...these simple things that seemingly represent gender or confidence. ..these movements that allow me to express myself physically.
Obviously, intellectually I know it's ridiculous and crossing my legs, wearing the trendiest fashion or carefully picking out my image from hangers or makeup table does not in any form correctly constitute confidence, womanliness or capabilities.
Still, it's there. It's all perception, including our own and it's a continuous workshop in understanding our own self and that it is ok. We place idealisms on social aspects, genres, social groups and not the individual form. "We", as in our self. Our self is to blame. There' society, but then there's us finding it within ourselves to be ok. If you're not ok, then no one else will be ok with you.
My legs feel heavy, like a pile of bricks that every once in awhile get topped with another. There's nothing elegant, light or airy about them. They are lifeless and it makes me feel heavy. With the increased heaviness of my body, what seems to have been lost in body muscle has journeyed to my mind. My womanliness has transferred there. It was always there, actually.
When I was in design college I used to hold onto my ideas in fear that I wouldn't be able to produce another one. Design school was a difficult program. It was hard, competitive, arduous and I felt alone, alone going though this, at the time, unknown condition and trying to make something of myself all at the same time. I had a hard time in college, because I was too busy trying to design or draw like everyone else in the true ID style. I stood in my own way for the most part and I stood in the way of my own growth. I did my best to keep up with the competition and mimic the style or way that seemed to consistently thread through all of my classmates, but it always came out as a stunted representation of what I meant to say. I was so consumed with thinking I didn't match up that I stood in the way of my own natural self and never lived up to my potential. Probably one of the things I learned most from college was about my own self and knowing that confidence comes from an individual place. I was young. I still am. We always are.
Now, I let my ideas go. I don't hold onto them like they are the last drops of vision I will ever have, because now ideas flood and they can't seem to stop coming. My gates keep widening and I realize I don't need to help it along--it comes naturally if you let it. Sometimes, I wish I could mentally archive these rapid ideas like index cards, and at times I do write them down, but they come too fast for me to egotistically hold onto them. Besides, another one always follows or in some form have been filed for future use until it is time for them to be intuitively picked up.
In everything be thoughtful and find new ways to accentuate your original self and accept that what you are is ok, indeed. No need to fit into a mold. Being too narrow about something breeds sameness. It's good to grab a number of influences and many times these "influences" are things we've subconsciously filed, but have a difficult time surfacing, because of the things we think we are supposed to be. The things we experience and see are all a part of our very own original story and I guess I'm learning to embrace all those, mix them together and release them into my own work, self and dreams.
So, even though at times it feels like I've lost my physical grace, and femine expression through the loss my leg's function, or the hands that apply my make up, I know it is not these things that hold my image, yet it's because I can't do these things, and what has resulted because of it, that really adds the pages to my own book. All that's waiting is for me to author it and accept it.
I don't exactly remember what I was thinking for this post when I thought of this illustration, but there you have it. A female HIBM patient (or any patient or person) experiences something different than a male HIBM patient might. There are things that each patient misses and I am sure feel less than, because of it. A woman losing her hair to cancer, a man not being able to carry his wife over the threshold, a woman not being able to carry a baby...but the acts, the clothes, the skin doesn't define as much as the true self. We all know this, but knowing and living it are separate.
As my friend once texted me, "Everyone's walking, be original"
In May I drew this (left) right after the "Bike for Kam" project was completed. She's "Stealth Kam", inspired from the guy's late night biking adventures, revines, roadkill and moonlit guidance.
Just to recap, "Bike for Kam" was a grassroots project I did with six of my friends. The goal was to expand awareness for my rare condition and raise funds. I have been involved with ARM (Advancement of Research for Myopathies) since the day I met them and have worked on many projects and events with ARM as a volunteer, but this was the first fundraiser I've done entirely by myself on behalf of ARM.
ARM is a nonprofit organization that has been in motion for over ten years. Founded by HIBM patients it has managed to raise awareness among the scientific and general community, provide grants to labs working on HIBM around the world and founded it's own research lab, HRG, in 2002 where much of the biomaterials that were created there have been used in other labs and scientists. It's important, since HIBM is so rare that it garners little interest from these communities.
The bike project's goal was to do a project that had zero project spending, so 100% of proceeds could go straight to HIBM medical research. With that, we raised over $22,000 online AND through an entirely new community that never or barely knew about HIBM or ARM.
It was a fun project and my hope is to expand this grassroots chapter to the community and to patients in hopes that they will do their own fundraiser within their community. As a small non profit, constantly challenged with resources and very very small volunteer base, I'm looking to help grow involvement. It's the only way we can reach the end.
You can't do anything as well as you could with a team, and many working together towards a common goal is the ultimate beauty. It's easy to be at odds, it's more difficult to come together.
I remember the day the guys left the Golden Gate Bridge heading onwards to PCH, I returned home to a mess of a house from the weekend of 6 guys staying in my place, all the cooking and prepping for the trip. That was such a fun weekend together. I looove a messy house after people have visited and left. I like to look around among the messiness and know that people had fun there, even if I'm tired afterwards, it means my house is being lived in, and what good is a house if it's not constantly open to others?
It's funny I call this one "Stealth", because I'm anything but quiet when I move.
Below are pictures of all the places Lil Kam seen during her ride from San Francisco to Los Angeles. She's tattered, dirty and full of secrets and dreams that she collected as she rode. I made her to travel with my friends since I could not :)
Grab the moon and stars like balloons in the sky.
Sunday seems to be my, "try a new dish", night. This past Sunday I tried making homemade kimchi chigae for the first time. I even made my own banchan (side dish); beansprout (kongnamul muchim) and sesame leaf kimchi (Kkaennip kimchi).
Kimchi is a traditional fermented Korean dish, made of vegetables, cabbage, bean sprouts, daikon, with varied seasonings like garlic, salt, red pepper flakes...Kimchi, in cabbage form, is the ultimate staple in korean food and almost 4,000 years old. Due to its affordability kimchi was cured in small quantities, except the winter months where large quantities were jarred, stored in the ground and could be eaten for 3-4 months, enough to get through the harsh winters. As kimchi rests, like all fermented and pickled foods, and people, it changes.
Throughout generations of the nation for thousands of years kimchi was a counterpart to the traditional korean meal of rice and soup and served daily with every meal. Serving as a side dish, the star of many chigaes, a stew like soup, or other main dishes, kimchi is spicy, smelly, rancid, but oh, so wonderful tasting. It tastes like home to me, which is odd since I was not raised in Korean culture and probably ate my first kimchi (besides my first four years in Korea) when I was 20 years old.
Kimchi Chigae is probably one of my most favorites of chigaes, so naturally I wanted to see if I could make it. Ingredients include kimchi, red pepper paste and powder, scallions, rice cake, tofu, onion, garlic, pork belly. Korean cusine is always accompanied by side dishes (banchan) and eaters can expect to see anywhere from 2 "free" side dishes to 30....yes, I had 30 wonderful side dishes accompany this one meal, in Wonju, when I visited Korea for the first time back in 2002. I was amazed by how much food lined the table while feeling a little guilty that one person could be given so much food when so many have none.
Well, I didn't make 30 side dishes on Sunday, but I did make a couple of my own for the first time. It was fun. These days cooking feels like the only creative thing I get to do. I need to get myself back...
A friend recently told me that I shouldn't post things like my cooking or all the ambitious activities, like skydiving, because it makes me look NOT disabled...after all "normal" people don't even do these things.
"Well, what does a disbaled person look like?" I asked, "because I don't want to look like that--I just want to be me"
I can only be me and while it looks like cooking, or the like, is effortless it's quite the contrary. It takes so much effort and I'm shuffling milimeters to get to where I need to inside my kitchen. It may end with a pretty finished picture of the results, but has nothing to with the results and rather all about the journey within that one, two, three + hour cooking projects.
A few weeks ago I was invited to a Pecha Kuchu Presentation. PechaKucha 20x20, Japanese term for, "chit chat", is a simple presentation format where you show 20 images, each for 20 seconds. The images forward automatically and you talk along to the images. This helps those who talk to much ;), keeping the presentation conscise and forward moving.
Pecha Kucha Night was devised in Tokyo in 2003 as an event for young designers to meet, network, and show their work in public. It has turned into a massive celebration, with events happening in hundreds of cities around the world with San Francisco being the top Pecha Kucha city in the world outside Tokyo where a couple hundred spectators are usually expected to congregate.
The theme was "Grassroots". Huh, I think I know something about that. I decided to use my illustrations for all 20 of my slides. I was running out of time, so unfortunately I didn't get to do many of the drawings I had planned to show for it, but no one knows that besides us ;). With the bike project just closing, and many other things that were waiting for my attention, I was working for a few days drawing till late trying to figure out what I was going to say.
My slides pretty much consisted of me storytelling through how I found out about my condition, what HIBM is, how it could be treated and the bike for kam project I did with my friends. I absolutely didn't feel prepared when I went up. The presentation was on a Monday and so I was working on it over the weekend. I remember towards the end of putting together my presentation it was becoming a little emotionally draining. I had dealt with the bike project, a month + of doing nothing but talking about HIBM, and now I had to do a presentation consisting of very telling and personal drawings. I don't mind talking about it, nor do I want people to hesitate to ask me about it, but it can get heavy at times.
As I draw, it can be a very personal moment. I'm drawing myself and drawing out my feelings as I'm figuring them out. There have been times that I cry while I draw and I only then realize how much I share about myself...parts of me that are still a surprise to me even after all these years. We don't predict that these are "topics" that we will talk about at a later time in life, a topic that seems so foreign to you in one moment and then becomes the most intimate of topics in the next.
I suppose the presentation went well. I was praised for my illustrations and was surprised, since I don't consider myself a "professional". I was told I "elevated the night". That was nice. A nice compliment. When I started drawing myself I honestly didn't expect people would like my illustrations as much as they have.
I have yet to draw other people in my illustrations, because the truth is I struggle with that still. It doesn't come easy to me. I can't whip out characters quickly. I kind of started illustrating on my own without "technical" training, so each drawing is new to me. I've been trying to work on a thank you illustration for my friends who did the bike project, but having a hard time drawing representations of them. I want to draw each of them as boys, print it, frame it and give it to them as a gift, but I only seem to be able to draw myself and my experiences. When I'm drawing myself it doesn't really feel like I'm drawing. It comes easier. It's not "art" to me, I guess. I'm not trying to attach meaning to a drawing, the meaning is behind and during the drawing. It is just what it is without arbitrary depth. It just is and that's it. No need for further poetic explanation. I feel like I'm nine years old sitting at the table, with my sneakers unable to touch the ground, so they sway back and forth to the beat of my pencil and I'm just doodling without thinking. As soon as I start thinking I ruin it.
Later, I looked at photos from the presentation and saw myself in front of a crowd in a wheelchair. It was odd. This would be my very first public presentation in a wheelchair. Not that it matters, it's just new...and I'm constantly changing...and everyone gets to see it...whether I want them to or not.
I ended my speech with, "Sometimes you get to choose your causes, and sometimes they choose you...and it's all in how you respond."
I'll try and upload the video of me presenting. Either when they upload the night to their website or I'll put together my slides and redo my VO over them.
Pecha Kuchu Night May 23, San Francisco
I have some that I need to upload that precedes these, but thought I should post something. Here are a couple cooking projects I gave myself. I don't normally have time to cook during the week , and so I tend to have an itch to make myself try a new dish on the weekend. Some people eat to clear their thoughts, I need to cook to clear them.
Couple weekends ago I made Jason some Anaheim Chili, lime dredged shrimp tacos w/ cilantro slaw and fresh salsa on toasty corn tortilla. Kinda made up my own recipe for this one and it turned out awesome. I really love shrimp tacos. You don't feel so guilty afterwards. ;)
This past Sunday, on a whim, I decided to try Pierogies from scratch. I love Pierogies, but I'm not sure what made me take on the task. I always think, "Oh, this will be easy", but the projects always end up more nvolved than intended. It actually wasn't difficult to make, just time consuming and alot of steps for a Sunday night. But, nevertheless, I was on a mission. After grabbing some ingredients I got home and realized we forgot a couple things, so Jason went to the store to pick them up. While he was gone I started peeling the potatos and it was difficult. My fingers felt so weak and each potato felt like a brick. Peeling 3 potatos took me about 5 minutes...when it should only take 30 seconds.
Well, this is the usual. Everything I do takes twice as long and then pair that up with high standards and you have quite a project. I guess that is why it is meaningful, because so much does go into everything. Nothing is easy, but I'm not prepared to compromise standards. I try not to get upset that it is so glaringly obvious that my arms and hands are so much more weaker than a year ago. My legs had problems, but I could withstand them and crank out a meal for ten as long as it was accompanied by a good amount of stamina. But, now my arms and fingers are getting so weak and it sometimes breaks my heart to think of the possbility of one day no longer being able to cook. This probably wouldn't happen for awhile, but it just requires that much more strength and stamina from me to carry on the task. I guess, I just can't let it go. I love it too much...like alot of things. The love of certain things derived out of losing other abilities, like running and being active, so I improvised and gave my attention to things I could do, like cooking and drawing...but now those things are slowly being taken from me...
I have alot on my mind lately and when that happens I tend to want to put my mind somewhere else, like cooking for example. Cooking is one of my quiet places, it's comforting. My mind is at ease and purely in intution mode. I can't sit still even though that's all my body wants to do, so that is why I gve myself these little projects to keep my mind going and challenged. Plus, it's fun!
Below is my Golubtsis (stuffed cabbage) and Piergoies from scratch. I've never made Pierogies, but they turned out really good. Inside the Piergoies is potato, carmelized minced onion, leeks, garlic mixed with 3 cheeses, ricotta, sharp cheddar and parmesan cheese. It was a fun project, but I was cursing myself by the end of it ;).
It's an icecream; Häagen-Dazs, Ben & Jerry's, Baskin-Robbins, Freaky Ice, Good Humor, Dairy Queen, Edy's, Mother Dairy, Nestle, Stroh's, Schwan's, Pink Berry, Blue Bunny, NOT Healthy Choice icecream kinda day. What a crappy day...It's all crappy, really.
I. HATE. You. HIBM.
With everything I am, I hate you.
Driving through amazingness mixed in with heavy dense storm clouds. Lovely.
This one is of me, before I was "Kam". Since, I went back to Korea in 2010 to visit my orphanage and foster mother, I've been wanting to illustrate some of the moments I experienced while there, but life catches up to you and nine months later I'm only starting to think about that time again.
Tracing steps I never knew was truly a wonderful and fantastically surreal experience, and something I don't take for granted. I was an orphan until about 4 years of age, but never realized how long 4 years is to a child until I stepped back in time. I never realized how much to-and-fro I did in the first year of my life. I had no stability, no home, no one who called me their own. I was just another child in the crowd who shared the same quandary with those around them.
The first 4 years of a child's life are supposed to be crucial, and the most important, and while there I remembered trying to get a sense of what I may have been like years ago in my birth town. Through paperwork that listed my traits and now visual sensory, I tried to mentally piece together my life in Korea. I would imaginatively superimpose my 4 year old body running around in the streets of my orphanage, and for some reason this memory always includes me running around iwith a ball. While growing up I never really thought much of Korea while, so I didn't spend my life hating that I was adopted and accepted my adoptive family as my actual family...but, surely there were always remnants of my past memories seeping beneath my skin. I'm sure. Memories that I could only appreciate as an adult.
I have a ton of footage from that trip (Korea and Thailand), too, and plan to compile it in a little video montage. I hope to do this soon. After doing this piece I realized I'd like to later do a series of lil orphan Kam. In this illustration the korean hangul (alphabet) writing is my korean name, Young Eun Kim. It was an amazing and unforgettable experience and I have to share it here soon. I keep saying "soon". I think I should rename my blog SOON.
I keep saying I am going to update here, but I'm afraid I haven't been very good about it lately. There is definitely plenty happening and I feel busier than ever with endeavors and projects flying around me, summoning me. I think Jason thinks I'm crazy with the level of work or ambitions I give myself. I can't help it. My body limits me, but most of the time I have to work just that much harder to maintain the level or standard that I did before...still, it can get tiring, for sure, but I just don't know any other way. I feel like I'm running a never ending marathon with no water breaks, but at the same time I'm not prepared to sit around and do nothing...waiting...being sad or hoping for it to get better. Not that I don't have my sad days. I most definitely do. I'm just not built that way, I guess. I don't believe in that. Hope can only meet you halfway. It's a symbiotic relationship. You can't hope to become more successful, if you don't work hard. You can't hope that the world had better people in it, if you yourself don't care about others, or the cliche saying, who said it?, you can't hope to win the lottery, if you've never bought a ticket. And, you can't hope that your friend will get better, if you've never helped them. Just waiting around can cause "death".
However tiring, I think I would rather reach the end of my life, really tired from living out too many ambitions or for others, than well rested, living leisurely and just for myself.
A time of alot of changes in many aspects...professionally and personally...some that requires picking a new direction where new opportunities and new experiences await, and other changes that I don't really get to pick, but forced to adapt to... Crossroads, if you will. I have a bunch of updates waiting to be posted...I wish I had more time to post here.
Until then, lately I've gotten back to illustrating and should probably upload them here. This one is my most recent. I woke up this morning and immediately my arms began to talk to me. They felt heavy. Heavier than yesterday. I don't like feeling my arms weaken. It's an experience I'm not sure I could describe. Everything is in slow motion, but at the same speed. This is no fun ride and I'm doing my best to tell myself everything will be ok. Though, the feeling is a similar experience to my legs, it's different in its own right. My arms feel heavy, like dead weights hanging and every so often another sand bag gets added waiting for the breaking point. I dislike this feeling immensely. I feel like I have no choice, even though at times I like to dissect and see if somewhere a choice is hidden. Instead, it tells me, "You have no say in this...just wait". I sense the convergence where my arms meet my shoulders and it feels considerable. So, this is how I could visually communicate the feeling, bags of sand weighing down what already feels like a wooden body....
http://pecha-kucha.org/night/san-francisco/44
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