Tuesday, January 14, 2014

Living with it

My last post made me feel uncomfortable.  I felt naked sharing that I felt limited by the obstacles in my life.  Even though I have these and MANY other things challenging me, I  want to make sure everyone knows  that I don't let it get me down.  In fact... It is improving my awareness.  So as my challenges become more challenging... I become, some how more solid.  I am more committed to what I love more than I ever have been.  The challenges are therefore virtuous in some strange way.  They enhance who I am, they do not detract.

When I first got diagnosed with Fuchs Dystrophy, the strange eye disease that I somehow got blessed with,   I FREAKED OUT.  First of all: I had no idea what it was.  Second of all :the doctor who diagnosed me was a little bit of a ... how we say?   Dickhead.

 Normally I would be more polite about retelling this story but....please know I chose those words to drive home what a jerk he was.  A smug, insensitive jerk.  He just blurted this diagnosis out to me as well as punctuated by saying "aka, you're going blind" .  He says this as if he was telling me to have a nice day or something and when I asked "just what is Fuchs"  Instead of freaking explaining it to me, like a normal person,  he said I needed 2 corneal transplants.  He also said we needed to do it right away because he was moving to Texas in 2 weeks.

Really, Doctor DICKHEAD?   You want to get in a nice double corneal transplant before you go?  Not with my eyes you don't.  I felt like I wanted to cry and I also felt like I wanted to kick this guys ass.  I absolutely can't tell you what that felt like to hear.  I couldn't imagine being such an arrogant jerk.  I had no clue what this all meant for me and my future as a seeing person and he's just not a nice person.  I don't like people who arent nice.  So...Armed with no information I left his office.  I decided I was done with him.  I mean really.  He could have sat me down and explained it to me.  And he certainly wasn't cutting my eyeballs and then moving half way across the country.  No sir, no way. no how.

After reading up on it, I realized this Fuchs thing is not funny nor is it something I am interested in being part of.  I am an artist.  I have to see what I am doing.  I mean,  OMG!  So I really struggled and grappled and freaked out and got all sorts of upset.  Then I realized.  Artists aren't the only ones who want their eyes.  We all want our eyes.  Every last one of us wants to see what we are doing.  I am NO different  than anyone else.  No more special than anyone else.  I told myself to get a grip because whatever this is... Is either surgery, progression or both and I better get to seeing everything while I can see.

I am aware that I have limited time to see what I am doing.  What I wasn't aware of is I am  capable of  adapting.  I  am resilient.  I have some things that offer me some relief from the pain of it and I am able to be brave when I need to be.

I am reinventing my process.  I am reinventing me.

Part of adapting means giving up things that one takes for granted.  My first big thing was the realization that I cannot drive anymore.  I thought not being able to drive would be the worst thing that ever happened, but, it was hardly a blip on my discomfort radar.  I miss being able to jump in the car to do this that or the other thing but,  It's okay.  I actually spend less time wondering aimlessly.  Less time thinking I need something "right this second"  And I am not using energy, spending on gas and I am not polluting the world.  My little self has a tiny carbon footprint as a result.

I have decided to open a bank account for the money that would have been spent on gas.  I think what is saved should be spent on something I have always wanted,  A kiln perhaps? I have decided that as my world changes because of this dreadful decline that I will reward myself with something.

So I am a bit of a shut in and I am also alone a lot.  Ray, my partner, works away from home and is only home every other weekend.  Since I don't drive and Rays not here I have learned to get everything overstocked food wise and need wise on the weekends he is home and I really don't go anywhere very often.  Its almost like planning.  The blind beader with A.D.H.D,  has learned planning.  It's really almost organised.  it's a forced new behavior that might be beneficial to other new behaviors that are improvements.  Who knows?

I've grown so accustomed to not going anywhere , even when given the opportunity,, I decline invitations.  I have adjusted to not driving,  I've adjusted to being home all the time.  My space is quiet and peaceful.

I am not saying that I don't have moments where the reality of decline doesn't rear its ugly head.  It does.  I just try to snap out of those thoughts when I have them.  I feel frantic sometimes.  I want to work work work and create while I can.  It's a motivator!

To all of us dealing with stuff that gets in the way, I say we can do things better than before because we know it is the Here and NOW that matters!  We know that the limitations aren't going away.  So we know this is OUR time.

Wednesday, January 8, 2014

Something to say every fifteen minutes!

Shortly after my fist blog publication I sat down at my computer for my daily email deleting session.  Amidst the junk, with my finger poised on delete, the email I had been waiting for arrives.    I realized I have something to say about something every fifteen minutes or so and that if I had waited only a minute or two I would have found something to talk about.  I would have had a juicier first blog.  

The email that came was about the acceptance of my work into a show I was hoping for. Not a show, show,  Like craft show... But a SHOW SHOW, like an exhibit. At a museum.  Like the real deal.

Suddenly, one little email changed everything.  I called my Bestie.  Texted my brother,  and from that moment on…….. with the clock ticking,  I’m thinking about nothing but this Museum.  I'm thinking about what it means to create and serve up something museum worthy. My ho hum attitude about bead blogging is replaced by excitement, joy and a real sense of something to talk about.

Having something to talk about does not mean tooting my horn.  I’m not big on tooting.  It's about creating on a schedule and making it happen.  Its about making things happen when it's hard to make things happen.

Now, while I have good news on the table:  The exhibition........I have truth on the table also: Limitations.  This is about revealing challenges that far exceed ones abilities.  It's about my struggle to create when I have challenges that are difficult to over come.  It is hopefully the beginning of a discussion about overcoming obstacles and making art.

Before I dump my reality onto you I want to reiterate that this is not me presenting some sort of drama nor is this a “whoa is me".  This is about how one adapts to changes.  These are my personal challenges, yes but,  I  want to raise awareness amongst us about the challenges artists face.  Not just my challenges.......but all of our challenges.  What I want to explore is what  its like to be committed to artistic excellence when I can’t see what I am doing. (literally) and what I want to explore is what goes on for you that get’s in the way of your artistic excellence. I want to hear about what you face and build up community about this. 

So without further ado, I reveal what very few of you know:   I can rarely concentrate. my greatest obstacle:  I am clinically diagnosed  as having Attention Deficit  aka A.D.H.D. (Attention Deficit Hyperactivity Disorder) which get’s in the way of staying on task, focus, organization and other fine important things needed when trying to get a job done.  This distractibility is not garden variety.  It is ever present and debilitating.

The Second obstacle being Diagnosed with Fuchs Corneal Dystrophy, a rare eye disease, that leads to blindness and is well on it’s way to doing so to me.

Now I could sit here listing plenty of other problems that limit me.  But that is not the point.  The point is we are all evolving all the time.  That our situations change and that we adapt because we have to adapt.

So I leave you with this thought:  I am the Blind Beader with zero attention span and  I am exploring how to make art with challenges like these. What your obstacles are, are,  most likely way different than mine. I start here by revealing what is getting in my way in hopes it can lead us into an open discussion about creating under pressure, with obstacles. 

Friday, January 3, 2014

Blogging Commitment 2014

I have decided to turn over a new leaf.  (Well several new leaves) this coming year.

Starting with blogging.  Something I intended to do five years ago when I joined and never did.

I was uncertain that I could or would or even wanted to talk about beads and beading every day.  Or even once a week.  And Have decided coming into this new year of cleaning, purging, creating and loving myself and my people that beading is not what the blog is about.  It is.  But , it isn't.

The beading, Is my self expression.  It is how I take feelings, thoughts and very personal visions and express them or interpret them into something people can see.

I use beads to spill my guts.  I use them to express what I otherwise can't.  I use beads to make money.  To sell, to trade, to fundraise, to feed my soul, to teach and learn.  So it is about beads.  But the beads are not able to stand alone without me.

So in this year I will attempt to share more than I normally do.  Express more.  Create more.  Clear some clutter and share the honest truth of the challenges many of us face or, rather that I face.  I will do my best to put forward what I can, as honestly as I can, either through words or my art.

So welcome to my first real post.  The post about nothing, really except my desire to commit to something manageable.

No first page would be complete without a link of some kind.  So I leave you today with a link to my completely neglected website


another link:
to my also neglected facebook fan page:

And a great image of one of my many crazy antlers taken by

Dawn Marie Spaulding