"If I wheel for you, you get your money."
Inspired by Drive. Great movie, fun soundtrack. I couldn't resist ;).
"If I wheel for you, you get your money."
Inspired by Drive. Great movie, fun soundtrack. I couldn't resist ;).
My Shel Silverstein moment.
Scissor Girl
scissor girl never knew what to do
all day long rubber band hands
seem to stick to her like glue
pulling her here, there…everywhere
scissor girl seemed quiet and meek
taking on more and more hands
that all day went, “squeak, squeak”
until one day…
scissor girl finally found a pair of scissors
they had been in her cabinet all along
snippety, snip, snip - fizzure
it was that quick, they were gone.
He knows not what he does, only that he has to be with me. He lurks and hides but I sense him. Though he is such a big part of me, I don't want him. This saddens him. HIBM is Oneiros. He has real feelings, real purpose and real attachment to me.
I haven't been much of a poster on here but I have been drawing alot. I go through periods, I guess. Sometimes I don't want to "speak". I'm doing fine and there is no particular reason but at times I would rather draw than write.
Picasso's artwork is often categorized into periods; his Blue periods, Afrian-influenced periods, Rose periods, Cubism. People are like that, too. It's not that I don't have anything to say, I have too much to share and say, but at times I prefer the solitude of just me and a drawing.
Sometimes, I feel like I am saying more with less. Sometimes, I get tired of the sound of my own voice or tired of sharing so much that to me feels boring. Sometimes, it's not about telling people how they should be, how they should view things or the beliefs they should hold, yet it's the quiet sharing or story-telling that can drive a point home.
A few weeks ago I watched a documentary on the Topps Sisters, a pair of farm-raised lesbian twins who write and belt out country songs, yodel, perform sketches that lampoon both rural and society folk, and champion political causes. Their act is fun and kitchy.
While these sisters could have rebeled and protested with loud words and disdain, they instead decided to entertain their point home. They used a sterotypical conservative medium to make their liberal message palatable to conservatives. They did what was genuine to them. It was less about being "right" and more about sharing who they were so that others may come to understand their plight and perspective. If we have an experience, we should share it.
Sometimes, sharing in a quiet way can be just as effective as angry, intolerant reposting of everything we hate. Sometimes, the best way to change another's view involves not trying to and instead sharing oneself.
I have definitely found an interest in story-telling. I have no training, I was not an english major, but I did train in design and have stories in my pocket. I was not trained in illustration, but when I began I merely did what I thought felt right and deduced elements I had learned in design school. I then transported that to personal drawings.
I like story-telling a seemingly simple moment and project it into a drawing. It's an interesting process for me and the viewer. I often receive emails from strangers who share how my drawing applies to their own personal experience. Simplicity is difficult, but the simpler one can be, the better. It's not about being above the audience, it's about inviting them in. At least, this is how I liked to be talked to.
I was watching filmmaker, Andrew Stanton (writer and director of Finding Nemo and WALL-E) give a speech at Ted Talks on the art of story-telling. It sounded a bit formulaic and there was a science behind it, but overall it was about being genuine. It's about real sharing and not about being right or with the agenda of changing your audience's opinion. If you go in it for that reason then you're misguided. Then you are saying you are right and that is one-sided.
He said, "We all know what it's like not to care" and "that we are born problem solvers, we are compelled to deduce". We don't need to be told how to act or view, handheld, talked down to or manipulated into thought. He says, "Use what you know. Draw from it. Capturing a truth from an actual experience."
While blogging and doing art became a way to spread awareness about my rare condition, HIBM, the organization (ARM) and the scientists dedicated to bringing treatment to the public, I would much rather have my privacy. But, this path (blogging and art) felt like a natural way to go and I let it be however it wanted to be. I never realized how much of myself I would give when I started this whole endeavor a little over a year ago. Even prior to blogging and art, I already felt burnt out by HIBM, but this brought it to a whole different level. I'm very glad this endeavor came about, but at the same time it can be exhausting and I've realized that keeping an audience is almost like a full time job.
This drawing, "What's everyone staring at?" is an observation I have when I am out in the wheelchair, especially if I am alone. When I was walking full-time I was told that people would look at me differently when I go into a chair -- even my friends. I don't get upset when people stare, but I do notice it; the stares as much as the people overtly trying not to look, which is almost worse.
Sometimes it's hard to not feel uncomfortable and not feel like the odd person in a sea of "normal". Obviously, I know better, none of them are normal, either. But at a quick glance, as long as everyone is acting similarly, they look the normal ones and I do not.
When we walk past each other we make quick assumptions based on someone dresses or looks, but in general we regard most passerbys as normal people we are passing. But when you see something that obviously fits outside of that box, such as a wheelchair, we categorize them as disabled. Different. And thus all the information and feelings that we have learned about this particular group, we tag them with. Feelings of pity and sadness. "They must be limited in every way", we think and put into this unproductive box of a disabled world.
Until they talk to me. For some, I see their eyes glaze over in confusion when they realize I am a professional, articulate, have desire and passion.
After this it can go one of two ways, they realize, "Hey, this is a real person in front of me, it's not so alienating to understand them." OR they say things like, "Well, good for you for trying to live like a normal person." or " You deserve it, you've gone through so much".
A comment I greatly dislike. A comment that reeks of ignorance. Nothing makes me feel so small and insignificant. And I'm a pretty confident person with a sense of humor about myself.
I can sense the uncomfortable stares.
When I am out alone I definitely get looks, looks that say, "Why are you out here alone?"
Looks of wonder. Looks that are sad that such a young girl is going through such a thing. One day when I was rolling, this drawing came to mind. A crowd of the sameness and how they react when anything different comes into the scene. It can be simultaneous look of stares piercing you, even if they don't obviously look. And, here rests an opportunity to educate an audience and share with, no matter how much I hate being an educator of this subject.
Much of the trick is making your audience comfortable. I feel like much of what I have to do is make sure everyone is "ok" with it before we can begin. Let them know that it is indeed ok and I am real. If I truly want them to learn, then it's not about me.
Sometimes, I want to be alone when I'm wheeling around so I don't make eye contact or engage in conversation with strangers, but as soon as you make eye contact and let them know that you aren't so different, the attitude changes. It can be all about how you act. If you act in self-pity, then everyone will pity you. I try to act as "Kam" because that's all I want to be. That's all I have ever wanted to be and that's all most people want to be; to be acknowledged as their self. For the other 10% who will remain ignorant lost causes, it' not my problem. I did my best.
A combination of something I saw, feel and parts of a recurring childhood dream.
One weekend I was exploring and paid particular attention to a row of street signs and wondered, "Are they talking to me?". These signs seemed to list off everything I couldn't do.
It has been awhile since I've posted. In the meantime I have finished a few drawings.
I remember the day I picked up leg braces that were specifically molded for my legs. It was the summer of 2003, a year or so after I had started using a cane. For my condition, a patient experiences what is called 'foot drop' early on. It's the dropping of the forefoot due to weakness, or other reasons. It was this initial symptom back in 2000 that triggered the alarm that something wasn't quite right.
I look like I'm dragging my foot when I walk and through the years it has gotten worse. Back in 2003 I knew I couldn't safely walk around anymore without assistance. I wasn't happy about this day. After all, leg braces are so not cool.
Leg braces stick out in a crowd and people stare, the very thing I hate. I don't like to stick out or be known. I'm a behind the scenes person. I barely liked to be noticed and now suddenly my list of assistive devices were growing. But I was going to college, living alone and in a grueling, both physically and mentally, college program so I couldn't have any pride when it came to getting things done. By any means necessary.
This summer day I drove to my orthotics doctor and they showed me my brand new pair of legs. A milky white pair of plastic braces that run up to just below the knee and to the bottom of my feet. They were ugly. I hated them. I felt embarrassed for having to wear them.
When I put them on my walking became drastically different. I was walking like a bionic woman. My strides were quick. I felt myself almost tumbling forward because it was to quick. I'm used to slow. Because they are a rigid plastic frame wrapped around my legs and feet there was absolutely zero flexibility at the ankles, which was difficult to get used to. I felt like a robot with these foreign and ugly apparatuses tying me down. I was like a dog whose head hangs low when their master forces them to wear embarrassing head cones. This was just another milestone telling me that this condition was in fact real and the prognosis correct.
"It really does continue to progress." I thought.
I strided out of the office and though it was sort of a sad milestone, the gained abilities was a positive. I could walk easier, faster and I really did feel like a bionic woman. I could suddenly walk a little easier, something that had become increasingly difficult years prior.
There were all sorts of things I needed to get used to. Imagine wearing a cast on your legs every day of your life. How comfortable or sexy can you feel in those? They were heavy, clunky, sweaty and restrictive. They forced my foot to a constant right angle position, so you can imagine how uncomfortable they make my legs, hips and knees feel. My legs lived in these and they were always uncomfortable. Driving was different, lowering myself to the ground, crossing my legs, sitting styles, ascending and descending curbs, walking up ramps, etc. It was all different and I had to learn all over again.
Sometimes, I don't recognize my legs. The dented shins from years of wearing straps across them. My limp, floppy ankles. My lifeless feet that just hang there with toes that barely wiggle. They tell stories filled with character. They've seen some shit. They have experienced time at a much quicker pace then they should have.
Sexy really is all in your mind but the trick is getting past yourself. It takes some guidance to teach others, and yourself, how to look at braces, wheelchairs and canes differently. It takes a bit of time.
How do you unteach yourself the definition of what's cool, normal or acceptable? Even people who claim to be "different", against popular crowds mixed with efforts to be outrageous and unusual in their appearance still subscribe to a particular group and uncomfortable being with those who are not the same.
It takes a long time and everyone has their own pace, but what's sexy has nothing to do with your appearance, yet it's the confidence and comfort within yourself.
Years ago I did my best to hide my braces. I would never take them off in front of others, in fact most people didn't even know I wore braces. I always wore long pants or long dresses to hide them. Today, I don't care as much. I whip them off in public without a problem. I have not worn a short dress since the day I got my first pair of braces, but perhaps this summer is the time to try that. Another milestone of not caring if people think I'm different.
Nowadays, because the disease has obviously progressed over the years, my legs definitely don't feel like bionic woman anymore. In fact, I haven't for years as my legs have grown slower and slower. But I still vividly remember that summer day -- it was like strapping on my superhero gear that gave me super powers. Super powers that most people do without a thought.
All of us have unique superpowers. It's finding them that takes so long. I have got really good at learning to adapt, but still have a long way to go. My condition continues to force me to adapt, whether I want to or not, and as seamless as it may look, it's a constant struggle and every minute I am forced every minute to put myself out there.
Adaptation is an invaluable tool to have in life. It's all about adapting. If you don't adapt then life leaves you behind.
I started a fan page for my illustrations. For 2012 I would like to grow the number of drawings and start getting them out there. Help me by passing my link around and give it a "like"yourself!
Also, do you like my new shirt? Found it a thrift store. It spoke to me. When I grow up I hope to be shouting like an old man from my chair.
It's 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 this harsh-filled 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.
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). But she's still looking for 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, 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 Los Angeles.
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. We 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 time of the day when the sky is starting to settle in. That time when the sky seems to be winking as a reminder that the sun will soon be retiring. We climbed Zabriskie Point 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 its secretive sky. It was really beautiful. The innumerable stars were crystal clear.
On this trip 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. 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 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 in 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. I 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. You realize it's not about fitting in, it's about sticking out.
Merry Christmas, everyone!!
I've been meaning to do this post for awhile. I mentioned since moving back to LA I have been focusing on physical therapy. When I lived in San Francisco 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 (Privatized insurance sucks).
This place is different as therapy has come out of my own pocket. But this place is well-known and well-priced. I just finished 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, California called 'Center of Achievement'; an extension of the well known physical therapy 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. We grew into fast 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 emotional.
When AJ sense I was having 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 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. I would tell him if I laugh I become physically incapacitated because it takes muscles working in cooperation to both walk and laugh at the same time. My muscles aren't multi-taskers. So, I would do my best to focus. Sometimes in this hour I would take full advantage and day dream as if this temporary movement was my every day.
If I was doing the water treadmill I would try and stay focused to avoid tripping. With eyes closed I would imagine myself walking down the street, down the sidewalk like 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. With HIBM it's important to maintain what you have. Even though patients can't do alot of exercise, because it could damage and tear muscles, 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. Sometimes I wish I didn't care so much and was more selfish. I wish I concentrated on myself 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 of "What can I do?" comes front and center.
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 lonely. Because of the lack of help in this HIBM mission I feel overwhelmed.
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 this condition graduates to later stages you will have wished you would have done more to take care of yourself.
We may not be able to build muscle but the little bit we can work 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. Many of them 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. This one is definitely one of my more normal dreams.
I'm not sure if the whole teeth thing is a vanity thing, but you never know.
These dreams that I've had since childhood are usually ongoing and evolving and truly frightening. I'll save the gory details but I usually people I know aren't in my dreams.
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.
The teeth 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.
Maybe this stems from being fully aware of people around me who had lost their teeth at a young age, including my mother. 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 something. 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 some other time.
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 didn't really bother me.
Like every child I went through the stages of trying to fit in. But I had to do it a very white community. These adolescent struggles never really seeped in me so deeply where it paralyzed me socially or emotionally, though. But, I'm sure it has wormed its way into my subconscious and it's there. These dreams I've had since childhood, some of them are B.A. (before America).
Before I was adopted I had a childhood in Korea, a childhood I know nothing about or even remember. Perhaps these lost memories have resided 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 showed up in a very visual and real form; the loss of my own body. The fear of loss and abandonment. I, like everyone hate publicly listing all my fears. But hey, we all have them so there is nothing to feel embarrassed about.
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" was out typical conversation. I would hold it all in. I always saw myself as extremely introverted, which is funny because most people who know me now see me as extroverted.
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 we get older, it's no longer about safety, I suppose. We all have a story to tell and from its own angle it's interesting and real and deserving of being shared.
Like my boots?
I drew this 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" contributes insight into why this is.
Well, 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 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 patients are deficient in sialic acid which causes some of the muscle weakness. Normal muscles contract, so when you work out and get hot it's because your muscles are contracting heat and generates warmth. But, HIBM patients don't have enough muscle for adequate contraction and I guess that contributes to the coldness. That less mobility. The more I progress, the more coldness I experience.
If you've slept next to me 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 can become 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 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 don't share so you to feel sorry for me, feel bad, tell me how inspirational I am nor get attention, because quite frankly this type of attention is one I'd rather leave on the shelf.
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. 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 when it hasn't eaten for days or weeks. How they must feel knowing they have no home to go to. How quiet their days and nights must be.
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. Despite the utter pain it can 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. Maybe we wouldn't be as arrogant, self-centered and self-important.
HIBM has definitely contributed to me opening up.
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 while fighting some kind of being sick for the past four months. It's odd, besides my initial birth where i had all sorts of health complications, 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 aren't twelve anymore.
I 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 idea: a wrestler named "HIBM". What a schmuck. I envision 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 next to my bedroom door. I fell backwards, flat on my back with my walker perfectly straddled over me. Don't feel bad. By now 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. I hired her when I moved back to pop by a couple times a week for an hour to help out and in general someone who I could call in case of emergencies. I try not to rely on her for too many things so I can maintain my independence, but she helps me with little things; when I need a ride or get myself in a pickle like today. It's been invaluable having her available and willing to come when I need something.
"I'll be there in 20 minutes.", 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 make me look like I'm a feather dropping.
Seemed like a perfect situation to make my doorway into a drawing. After all I had spent a good amount of time 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 weren't perfect, yet shaky. But then I realized I've never been able to sketch perfect lines even before HIBM began. Not even in ID school. My hand shakes a bit when I draw. I 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 there I was walking 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. I recommend his book 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. This is in no way judgement to those that do. Every one of us have our escape routes handy in case we need to jump ship.
I guess for me mine is creativity and "doing". 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 so badly that I say, "Screw you" and imagine it up myself.
If I saw it exactly as it really was, such as this situation on the ground, it would only make me cry and frustrated.
The body is a very temporary thing...
There is humor in every struggle. Sometimes, I wished I had a camera on me. I feel like some of the moments are too good not to share. Even though it may bring about frustration or momentary despair the positions I get into when doing the simplest of tasks is both cockamamy and befuddling.
Like just now. I was walking over to my wheelchair so I could wheel myself to the curb to wait for my ride. As I let go over my walker to lower myself into the chair I was gripping onto the kitchen table for dear life. I somehow missed and only an 1/8" of my butt caught the seat. I'm not sure how this is possible since I have a huge bottom.
Nevertheless, my heart stopped, my defunct legs stretched out and with my back slowly giving out on me, my neck was having a hard time holding my neck up.
"Lovely ceiling", I thought.
I could feel myself slipping out of the chair, "Shit, I don't want to miss my ride to physical therapy", I thought as my limp body laid there holding on for dear life.
"I only have one shot. If I mess up then I'm on the ground and there is no way I can get back up."
Usually I have to get creative and use every piece of my body and brain to push myself up. My movements are merely millimeters but all contribute to the grand success. My legs are dead and I can't even move them to help give rise to 1/8" butt covered surface to say a 1/2". I do my very non-sexy grunt and groan. By this point I'm just plain upset that I have to be in this situation.
But seconds count as loud as any siren.
I don't know how I get out of these situations but once I do, nothing smells as sweet as that victory. So, size doesn't matter. It's relative. It's small, yet big and afterwards I celebrate alone.
Sometimes, too happy to stop and be upset about it
Sometimes, with a couple tears.
Sometimes, it's with laughter or humor.
Sometimes, Suntory time??
Even though it's hard, you never know yourself better or have more of an intimate moment with yourself than in the stillness of a struggle surrounded by tumultuous placidity.
And now, I'm on my way out to catch my bus to physical therapy.
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 requires a whole lot of planning and I need to gauge myself in order to accomplish everything I set out to do. Which means adding in extra time than I needed say the year before, taking appropriate breaks (as you can see me sitting in the chair above) and have fun. If it's not fun then all the struggle isn't worth it. If you really care or want something then the standards you set can be achieved in spite of struggles.
At the last minute before we headed to Michigan we decided 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. Jason and I made 8 homemade pizzas, 2 pans of ratatouille lasagna, piles of meatballs, huge salad...etc.
At the end of these dinner parties I never know how I made it through. 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" than cooking for others. 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 remaining messy place 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 about hour-long instant ramen?"
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