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.


  1. I am very admirative of the way you position yourself facing this horrible Fuchs-thing, totally agree that that eye-doctor is a horrible dickhead. I can so relate to the 'not going anywhere' - it is very difficult. But to me, you are to beading what Beethoven was to music. Genius!

  2. I agree with Cath. You are the very difinition of constructive. No matter what happens to you physically, you are a complex, aware, intelligent, creative person. You will not only survive, but I believe that you will continue to grow and prosper. I am honored to know you!