GREENGREENGRASS

Happy New Year!

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

 

Edward's Gift

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!!

 

Don't forget about yourself

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.

 

Alas, it was all just a dream.

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.

 

S-factor

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.

 

 

Contents in this site

Thanks to those that visit and read my blog. I probably don't know most of my visitors, but I respectfully request you to PLEASE do not use, copy, print or make prints of my drawings or use me as subjects of your work without contacting me first. Thank you and keep on truckin' :)!!

from my perspective

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...

 

 

The body is a very temporary thing...