Thursday, November 12, 2015

An Update- My Eyes

Funny thing.  When you think you're going blind and you find out that you're not, at least not yet, anything less than that seems totally cool.  I imagine that's how you feel when you hear the words "you have cancer".  Initially you freak the fuck out, and rightfully so, but then you realize that there are far worse things that could be happening to you.  I mean hey, you're not dead right. 

I say that last line jokingly.  In the midst of Complete Panic and Fear I read an article that said the only thing worse than death was going blind.  The person who wrote that article should be killed.  Joking again.
It's taken me months and months and months to get to this point.  To the point where I can kid about such things.  To the point where I can talk about my eye condition without tearing up.  I tell you the words baby steps have never meant so much.  
Since January I've experienced a wide array of emotions and states:
Complete Panic, what the fuck is happening to me!
Fear, lots and lots of fear.  Most of it irrational.
Denial, this is not happening to me.
Sadness, like in I've never felt so sorry for myself.
Desperation, I'd do anything if things could just go back to the way they were before.
False acceptance
More false acceptance
Avoidance, ignore it and it will go away
Empowerment, this will not stop me
Preparing for what's to come
As you can see from the list above I still haven't found real true acceptance.  I know it will come though.  In the meantime I'm currently hanging out teetering back and forth between Ignore it and it will go away, Empowerment and Preparing for what's to come.
I’ve been in worse places! 

Anyways, I’ve come a long way from where I left you back in May (here, here) so I thought it was time for an update.  Let's do this list style shall we.
1. I'm still not driving and I have accepted the fact that I won't be anytime soon.  After 2 more payments my car is going back to the dealer.  
In January when things were fresh and new Dar and I decided that we would give my brain a chance to adapt to the floaters (that actually can happen) and that we would wait until the end of August to assess my driving. 
August came and went and I still wasn't comfortable behind the wheel but I couldn't let go of the car.  In my head hanging onto the car meant that I would drive again.  The car was merely a symbol though.   
Prior to recent events my greatest fear was always losing the privilege of driving.  I've had to work hard for my license.  Unlike most people I didn't start driving at 16.  I think I was 20.  Since then I've had to meet regular requirements like behind the wheel driving tests, full reports from my eye doctors etc..
There's more though.  The harsh fact is this, losing sight and losing independence go hand in hand.  That's a tough pill to swallow my friends. 
Giving up my car doesn’t mean that I will never drive again, but not driving again means that I have to rely on other people to get me where I need to go.  Having a car doesn't change that.  Besides, I haven't been a driver for 10 months now so it's about damn time I let go of the car and SAVE SOME FRICKEN MONEY.   
2. The vitreous floaters have not gone away, either have the veils of blurriness or the flashes of light.  I'll have a few descent days where my sight is almost where it was before all of this happened but then BAM.  On Sunday for example I ran out of our home office in a frenzy because I thought a giant bug (like 3 inches and super black) was slithering across the carpet.  I insisted there was something there.  Dar searched the room.  There was nothing. 
3.  For about 6 months I didn't tell anyone outside of a very small circle what I was experiencing.  There were lots of reasons for me wanting to keep quiet.  Mainly I was in denial.  I also didn't want people to feel sorry for me.  Ultimately though I didn't want to be vulnerable at such a vulnerable time. 
In the last few months that's all changed.  I wouldn't say I'm shouting my challenges from the rooftops but I am definitely opening up more when it's appropriate.  It's been pretty magical actually.  I'd like to show you what I mean by that…
Picture someone you don't know very well (really do this ok).  Maybe it's someone you work with, someone you see at the gym, someone who lives down the street etc.  Whoever this person is, they're someone from outside of your inner circle. 
I know you have ideas about this person.  How they are.  What they're like.  From the outside looking in they may seem like they live a pretty charmed life.  Or maybe they seem nasty and you think to yourself, man they must have a miserable home life. 
The point I want to make here is this.  You don't really know anything about the person you're judging yet you’ve managed to develop ideas and beliefs about them.  Beliefs based on very little, opinion really.
This is where the term "everyone has their stuff" comes in and why it’s so important to keep in the forefront of our minds.  The person you were imaging just now, they're going through something.   
What I've learned through all of this is that people (especially the ones outside of your inner circle) want to see you without your armor on.  It helps them to relate to you, to be more accepting of you, to be more understanding, more empathetic.  I’m pretty confident that if you opened up about whatever it is you've got going on in your life right now to the person in this world that you think judges you the most, they wouldn't dare hurt you.  In fact they'd probably want to help you and in turn it would change your relationship for the better.  I know this because it recently happened to me.   
I've gained so much support from literal strangers because I've been brave enough to share my story and to be vulnerable.  I've been inspired by people who after hearing my story wanted to share theirs.  It goes against all of our natural instincts but if you can take the leap it really can be life changing. 
4. I went to visit to the Braille Institute of San Diego.  The point of this trip was preparation.  Until my visit I really had no idea what types of services or aids were available for people with low or no vision. 
While I was there I bought a few magnifiers to help me see better (real magnifiers, not the crap you buy on Amazon).
I played with some really cool high tech gadgets that are truly incredible and ridiculously expensive!

I discovered that yellow lenses help with sensitivity to light.  I learned that there are classes and resources to help me with things I never imagined I'd need help with.  Some things made me uncomfortable.  Some things I'm not ready to experience yet. 

I was so proud of my strength throughout my visit until I got to this space.

Each painting might as well have been a Mona Lisa.

Watercolor, clay, pottery, all done by those with little to no sight.  I was in tears the minute I stepped foot into this sun drenched space.  In that moment I felt hope.  Aw inspiring, completely consuming, hope. 

I don't know where I'll be six months from now.  What condition my eyes will be in or how I'll feel about what I'm experiencing.  I do know that while it might not always be pretty I will be ok no matter what happens.  I leave you here on a positive note.  All the best my friends.  XO


  1. Wow. You never know what you can handle until it's plopped into your lap. I don't know how I would handle it and I guess that's just the thing. You truly never know until it's in your lap. I am glad to hear that you are learning to cope and deal with it whatever that looks like for you on any particular day. : )

    1. You are absolutely right Cece. Never in a million years did I think I would be in the position that I'm in now. Even if I had you just don't know how you're going to deal with a challenge until you're faced with It. There are times where I wish I was handling the situation more gracefully but I don't allow myself to go there. I'm just doing the best I can. Thank you so much for reading and for your support.

  2. Shannon, you are SUCH an inspiration. I admire your vulnerability, strength, and faith in humanity.
    It's such a shitty care you were dealt. It's so unfair.

    I'm currently watching "Switched at birth" on Netflix, which features a deaf girl and the deaf community. It's actually really interesting, I'm addicted to the show. They talk a lot about the stages you described, which is what everyone seems to go through when something like this happens.
    On yesterday's episode one deaf teacher says that being deaf is a gift - it allows the deaf people to experience life deeper, and gives them community everywhere they go.

    It seems crazy, seeing it that way. But maybe it's the truth? I hope and wish that you will find positive aspects about your condition. It looks like you already started.
    Big hug, M

    1. Miriam, thank you so much for your note. It means the world to me especially since one of the things I admire the most about you is your vulnerability and strength.

      I definitely think there's something to your point about finding the gift in your challenge. When this first happened Darren and I were bound together tighter than ever in a way we never were before. That was absolutely a gift.

      I've been forced to ask for help and to rely on people like I never have before. It's strengthened relationships and has absolutely given me a better sense of community. It's hard to see the silver lining sometimes but it's there!

      I've not seen Switched at Birth but I'll have to give it a try this weekend.

      Have the best day. XO

  3. I love the honesty with which you address all of this. Also, Bono rocks the yellow-tinted lenses so if it helps you, I think you can pull them off even better than he ever has :)

    1. Lauren, you are so damn sweet! And what a great point. If Bono can rock them, so can I :). It's all about the frame!

  4. I'm so glad you decided to finish this and hit publish!! I love the pictures! I'm totally disappointed you didn't highlight your new accessory from your visit :) I'm continuously amazed at how you handle all of this, it's very impressive and awe inspiring. As I've mention you handle it so seamlessly, it's so easy to forget you are dealing with all of it.

    1. This post took on a life of it's own and is nothing like I had originally planned, but such is life. I think my new favorite accessory deserves it's own post. I'm thinking a roundup of sorts! I seriously have no idea how I've gone this long without it. As always M, thank you so much for all of your support. You're such a dear sweet friend and I am incredibly lucky to have you in my life.

  5. Always always always so important to keep in mind that everyone has stuff in their life that they struggle with - and they don't really owe you an explanation or a glimpse behind the curtain, but when you get one, it's sort of staggering.

    What an amazing/scary/overwhelming trip to the Institute.

    I know this journey is not one you're excited to share. But it's one that's important to share. I'm glad you published.