Uncertainty Is Certain

Uncertainty is a friend of mine.

The unknown is uncomfortable for most of us but we don't know how much until it's staring us in the face. For some of us the reaction is to become further unknown. We feel emotionally isolated and thus further isolate ourselves.

What I have learned about uncertainty is life is to be lived and not controlled and as much as I’d like some control over my body and this life, control is merely an illusion…for all of us. “We don’t know the future, much less control it. And yet we continue to believe in the illusion of control. We face a chaotic and complex world, and seek to control it.”

Read More

Another Year

I spent my weekend celebrating my birthday early. Every year I usually try something new, particularly scary, to celebrate another year like skydiving, parasailing, scuba diving or some big road trip. It’s a way for me to fight back against this progressive condition and welcome another year of it.

Since 2018 has been rough I opted for an anonymous quiet hotel-cation and relaxed. I guess that is something new for me?

In all times of struggle, always look for the beautiful for it's all around us.

Read More

What Is in a Year: What Is Chronic? - Part 1

I can hardly believe April is approaching and in a week I'll be 39 years young. I feel like 2018 has sped passed me in some cosmic blur and I'm doing my best to pick myself up and dust myself off.

No exaggeration, I've cried every single day and night of 2018.

My health has spiraled out of control with chronic symptoms not directly related to my genetic muscle wasting disorder, GNE-Myopathy. Last year when my symptoms became too big to ignore, I began an aggressive search for why and have seen at least a dozen different specialists.

Symptoms like debilitating chronic nerve pain, chronic itching, and chronic pain have become new friends of mine, but not the good kind.

Read More

What is Rare - A Look at Oliver Sacks and the Human Condition

“I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have loved and been loved; I have been given much and I have given something in return; I have read and traveled and thought and written. I have had an intercourse with the world. 

Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.” -Oliver Sacks 

Read More

Better Days Ahead

I love window light and its endless patterns. They are so simple, yet so graphic and descriptive. They tell a story of their travels; where they have been, where they are going.

Window light seeping in between blinds always makes me think of solitude, loneliness and contemplation. It makes me think of the days you don’t want to get out of bed, when you would rather let the strips of light lay on your body and make it bend to you rather than bending to life. Enough warm light to caress your face, as if those strips bring you some connection to the outside world, but hidden enough to stay disconnected so no one can see you. We all have bad days. Today, tomorrow or the future sometimes taunts us. The things we are struggling with whether it be a disease, disability, depression, death, loss, relationships or life’s obstacles that seem to hold us down with little hope. In those moments I turn my head towards the warm ray bans and murmur to myself, 'Better days are ahead'."

Read More

Summer la la land

We started our short road trip near Mojave desert area to visit "The Cat House". The Cat House is a non-profit breeding, conservation and research facility and home to over 70 of the world's most endangered felines such as the Amur Leopard where only 30 are left in wild East Asia. I'd recommend not going in the summer (because it's hot) and attend their biannual twilight tour where they bring out more of their cats that are hidden in their compound.

Behind The Cat House is an old abandoned mining town. 

Then we journeyed down to Vazquez Rocks.

Vasquez Rocks are formations sculpted by 25 million years of earthquake activity along the Elkhorn fault, an offshoot of the San Andreas Fault. Erosion gradually stripped away soil from around the rocks, leaving these ancient creations. 

Read More

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.

Find Your 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 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.