Playing Art Catch-Up

Hello?  Is anyone still out there?  I highly doubt it.  What am I averaging, a couple posts a year now?

 I'm hardly followable.  I get it. I barely blog now.  I know, terrible. I'm not sure why.

I guess I go in swings where sometimes I want to write or draw it out and other times I get myself into distractions and focus on living and enjoying life rather than dispensing my emotions or running, errrr, rolling to publicly catalogue it.  

During those times, I barely let anyone know what I am doing.  It's kind of like me not wanting to share everything about myself.  I suppose, I want some pieces to hold that I only know about.  I need that, too. I can't be mentally in HIBM 24/7, even though there is no real way to take a break from it, distractions or not.

If I'm asked about my HIBM I certainly don't mind talking about it. In fact, I'm glad if they do. I'm glad if they feel brave enough, or even better, unphased with asking me what is obviously on their mind. But if no one asks then I normally don't want to bother people and I spare them the details. With that, I guess I haven't been in the blogging or drawing mood. I go in waves.  

Drawing allows me to shed what I'm feeling without burdening others.  

There is a sense of calmness and working through the journey of emotions when I journal them through drawings and I need to be better at making time for them.  If I do keep progressing, which will most definitely happen if treatment doesn't draw nearer, I too would be interested in seeing the timeline of progression and moods through art. But I'm still hoping I won't see that day.

The thing is, I only share my drawings and my life because I want to motivate results and action.   I don't want to be just an "inspiration" because most inspirations are momentary and then forgotten about.

What am I supposed to do with that?  

It's not tangible. It's not something I can apply to the here and now, so I have very little reaction to "you're an inspiration".  True inspiration motivates action.  I guess I want action. I want passerbys to get involved.

I share my art for this reason and not to be watched from the sidelines as I deteriorate, hearing the words, "your art is so inspiring or you're so inspiring".  It's not right for me to feel this way but sometimes I get upset about this and I become discouraged and sometimes stop drawing or blogging.  When I feel like it doesn't matter, I withdraw. It's like a dagger to my heart. I open myself up not to be noticed but to perpetuate action.  

I find myself thinking that I don't want to hear how sorry everyone is ten years down the road when I'm already deteriorated, especially when something could have been done to prevent me from getting that far. I guess, I'm not interested in seeing sad faces ten years down the road when something could have been done.

These thoughts are unfair but honest.  I know things don't work out like this, it's no ones fault or duty, and patience is needed but time is always weighing on my weakening shoulders. Literally.  

With that, I realize I haven't posted art on here in a whileIn fact, I have only completed a couple new drawings in the past 6 months. I need to get better.  I have, however, been in four art shows that I never blogged about on here. For now I'll upload some of my newer drawings but you can always view them on my Facebook page

I'll get back to drawing this summer.

What the Heck Is HIBM, Anyways?

The textbook version of Hereditary Inclusion Body Myopathy (HIBM) looks like this:

HIBM are a heterogenous group of rare/orphan genetic disorders which have different symptoms and could be transmitted in an autosomal dominant or recessive fashion.

Generally, they are neuromuscular disorders, unlike MD which is skeletal muscle weakness, characterized by muscle weakness developing in young adults, causing progressive muscle wasting and weakness that can lead to very severe disability within 10 - 20 years. HIBM is also known as Distal Myopathy with Rimmed Vacuoles (DMRV), Quadriceps Sparing Myopathy (QSM), or GNE related muscle disease.

Now I could go into it further, talking about HIBM linked to chromosome 9, the defective gene regulating bifunctional enzyme GNE, that is the rate-limiting step in the biosynthesis of sialic acid and that Sialic acid modification of glycolipids and glycoproteins at the cell surface is crucial for their function in many biological processes BUT I'm guessing no one wants to read that or understands the "meaning" except for those in biomedical research.

The experience is so much different than the textbook image. In 2003, over the phone of all places, Mayo Clinic gave me my HIBM diagnosis. But my symptoms probably began in 1997/1998. Due to having 5 previous incorrect diagnosis', and a series of bad medical experiences which I will probably share later, I wasn't even sure if HIBM was the correct diagnosis. Clinically, though, I treated it as if it was, so at the very least I could seek next steps...if there were any.  I'm the  researcher type so naturally that's where I started. I remember sitting in a dimly lit college computer lab perusing online medical journals for information only to find the same bits of word clusters. I read the textbook definition, the prognosis, the symptoms and the black insubstantial words staring back at me; RARE, WHEELCHAIR, WEAKNESS, DEBILITATING, GENETIC, NO CURE, LIFELONG. I thought, "Well this can't be all of it. It doesn't make sense, there has to be more information...something". In actuality, it wasn't the information -- I just hadn't attached meaning to it yet. I was alone in my space - in that college lab feeling neither sad nor angry, but detached. I had been through a number of diagnosis' before, the poking and the prodding, the muscle biopsies, so to me this was just another diagnosis. I had a life to live and these words meant nothing to me, at least not as much as they do now.

In 2004 I remember visiting my physiatrist with this new diagnosis in hand thinking perhaps he would create some understanding out of all my research efforts. He evaluated me and asked me weird things like, "Can you be in a sitting position and rise without needing to hold onto anything?"

I thought, "What a silly question. Of course I can" and would demonstrate it for him in an almost cocky-like manner.  "Hmmm, I can do this all day, Doc. Keep it coming". 

Today, getting up and down from a seated position is difficult and slowly turning into non-existent. That moment in the physiatrist's office is suddenly clearer and more real than it was when it actually happened. As the years progress, so does my body and when I recognize those measurable moments of progression such as; climbing stairs becoming difficult to non-existent, to not being able to ascend curbs, to not always being able to roll over in bed by myself or having trouble with unscrewing a toothpaste cap, I grab from those insubstantial black words I read in that dimly lit library and I start to attach meaning to them - slowly, like adding photographs to a scrapbook.

de·bil·i·tat·ing (dĭ-bĭlˈĭ-tāˌtĭng) adj. Latin debilitatus, past participle of debilitare to weaken, from debilis weak

"Ahhh, yes. I know what that word means. Gosh darn it, I went to college and Webster tells me what YOU mean", but I so didn't. I so did not. 

People who know me would probably say I'm upbeat, full of ambition, positive, optimistic but the truth is it can't possibly always be that way all the time...for anyone. It's not as easy as it may seem and everything is not "ok" all the time. There are days when it is hard to gracefully swallow the reality. Throughout my posts I hope that my condition will become less of a name and more of an experience. It's not meant to drum up pity or sadness for I have no use for such things and that crap is counter-productive, but perhaps I can paint a picture for the strangers who may be reading this or other fellow patients. So, what is HIBM, anyways? It's a part of me but not all of me. It can't be explained in just one post or one definition and the definition isn't as important as the experience. I'll keep sharing - I hope you'll keep reading and let's see how this thing turns out. :)

GreenGreenGrass - First Blog Post

I'm the one with the hat on the bike decorated with streamers :).. My youngest brother is right next to me. I actually remember this day vividly and the way that Michigan sun felt. 

So, why GREENGREENGRASS (name of my old blog)?

I hate shoes and if I could walk barefoot all day, I would. I've always been like that and perhaps that is why I never placed much emphasis on shoes as an adult - even if I had the choice to wear any shoes I want, and choices weren't so limited due to leg braces.  

Of course the cliche is we never appreciate the simple things until we lose them, and I am that cliche to a degree. I actually DID enjoy this simple pleasure when I was a child, though. I loved, loved, loved to walk through freshly mowed grass with my toes curling between the cool grass blades. At the end of the day I loved that my little feet were dirty and sometimes blistered. This showed it was a day of playing hard and nothing beat the Indian summers and the smell of freshly cut grass. 

I have three brothers, which meant I grew up a tomboy. My biggest memories are running around with them, sometimes till sundown, all dressed in army gear, holding our plastic guns. I miss this simple pleasure so much. Nowadays, I pretty much can't walk without my orthotics/braces and shoes on. I named my blog GreenGreenGrass, because most things break down to simplicity...it always goes back to simplicity, just look at nature and it's design. 

A couple years into my condition my balance was getting shaky and little things seemed to increasingly be an obstacle. I  recall a memory of my younger brother, Josh, poking fun at me as I was walking out of the house. "Watch out Kam, the grass hasn't been mowed. It's extra long today", he said. I think I fell trying to walk through grass one day and that is where this joke came from. It's also when I realized, "Oh shit, that's weird...grass is a problem?". Josh was of course kidding and when he would say this joke, I would laugh so hard that the muscles in my back would stop me from walking. That's the way we are, we make jokes of everything and so do I. If you can't make fun of yourself then you're in trouble. He and I soon graduated to the joke of him rolling small pebbles under my feet as an "obstacle course". Apparently I was in training :)

I digress. Anyway, that moment was a simple one...but it stands out. 

Because I had "it" and now I don't, I've become extremely observant. I see people differently, I'm aware of my surroundings because I have to be so I don't fall. I place importance on different things and I miss the feeling of running, the wind in my face and walking without having to think and planning EVERY SINGLE S...T...E...P. I miss it. I sometimes catch myself intently watching people walk or run and it is such an amazing thing to me. "How do they do it with such ease?", I wonder.  If I see a group of runners or soccer players playing I will stop and watch their legs and feet in movement. I break down that miniscule moment into a system and it's so amazing. It is almost like I am trying to remember and gain that satisfaction through them. Why must we love when it's too late and gone? 

I wouldn't say love something out of fear of losing it, because fear only holds you back, but love it because you can.  Most of the time we are not aware that we are living a special moment. 

If you're not conscious, then you're not alive whether you have a body or not and ultimately it is about observing observation. Really think about what it is to "see", the essence of what it is like to be alive. With that, despite the enormity of my struggle, I've never felt more alive and never have asked as much from life as I do now.

Please enjoy all the little things. Bask in them. Ridiculously relish in them even if it is a blade of nature in between your toes. Use it. Live it. Love it.