A disability that isn’t visible or obvious

The thing I have found with having a vision disability is that people just looking at me see nothing different about me.  I don’t have eyes that show obvious disease. I have adapted quite well. The only time it becomes apparent is when I am suddenly in dimmer light, or asked to do anything that requires fine tune vision.  Seriously, I drive myself to the store, buy items and then at the register I have to ask for them to point out the line on which to sign my name.  It isn’t obvious and a lot of times if I don’t say anything it just looks like I need bifocals or more sleep.

For me living inside this disabled body I feel like I never get a break from it.  I am always aware of my short comings in sight. It is glaringly obvious there is a problem everywhere I lay my eyes.  The difficulty is that because I am ALWAYS aware of it and everyone around me isn’t is hard. It is hard because I have to constantly say “I am visually disabled…..can you help me with…” I have to live with this reality 100% of the time and to have to continually “say” it, just makes the sting of the reality hurt that much more. It reminds me when I received my approval from Department of Vocational Rehabilitation that stated “you have a significant disability”.  It is almost like if you or anyone else doesn’t have to state the obvious out loud, it won’t be true.  Well, it is true. And even though it is true it doesn’t make it any more palatable.  It becomes a struggle not to hide from it.

I have found as of late that I am constantly covering parts of my face with my hand.  It is just something I do without thinking about it.  After some serious reflection I realized that I am trying to hide behind my hand.  I feel so exposed and out there all the time that I just want to duck out of sight and maybe no one will notice. I am really hoping that this gets better.  I hope I can just go straight to stating the fact I have a disability and ask for help. I hope I don’t have to hide behind my hand for much longer. I hope that soon I can feel alright in my skin and that I can actually feel normal again.  I emphasize “feel” because physically I will never have normal eyesight again.  Thankfully I know several people who have all varying levels of vision loss and am inspired by where they are at in their journey’s and that one day I will cross over and feel at home with my disability like they do.

Low vision causes the need for practicality.

I was struck the other day by how much low vision has etched itself into every aspect of my life.  Specifically, I was looking at some dress shoes I own and was struck by the thought “Yeah, like I’ll ever wear those again.”  It isn’t that I don’t like the shoes, or that they aren’t classy; it is simply I can’t see the ground where my feet are and to walk in heels is ridiculous.  My feet are thinking “oh THANK GOD she can’t wear those any more, they make me hurt.”  But seriously, dress shoes or heels of any kind are inviting disaster to my already tenuous state.  I had already been down the road of asking if there are any dress shoes that are comfortable.  The response I got was, there is no such thing as “comfortable” dress shoes for women.  I just want you to know, that is WRONG on so many levels.  I watched the teen girls at the high school with their 4+ inch heels and think, wow in a few years you are really going to understand how stupid that really is. How many times have we worn shoes and destroyed our feet for what, a compliment? I think I am getting cranky in my middle age years.  Any way this blog wasn’t supposed to be me gripping about shoes.  It is about how low vision changes a lot of stuff.  I can’t even see my earring rack anymore and so for me to choose to wear earrings is a big deal. The main thing is that if I am dressed up in any way shape or form it took an enormous amount of EFFORT and time.  I think the time piece is what really bogs me down with this whole vision thing.  Everything takes extra time and sometimes it simply isn’t worth it.  Thank God I was never one to wear makeup, I’d never sleep.

A tribute

One of the individuals that have helped me on this journey is an optometrist that is trained in low vision.  Unfortunately, he passed away last week from complications from multiple myeloma he has battle for 2 years.  My father died of the same cancer 16 years ago.  I am reminded today of just how incredibly helpful this individual had been in my journey of low vision.  When he was out on medical leave doing lifesaving procedures he continued to be available for questions and worked hard at finding answers.  He was always kind, generous, thoughtful, and patient.  He did several of my low vision evaluations. That is where they do an extended eye exam to identify how much vision you have and what you are working with so they can recommend various training and tools.  He always took time to do a thorough exam and you never felt rushed.  When my insurance wouldn't cover the low vision clinic I go to he helped me figure out a way to get what I needed with the insurance I had. He is the reason I am over at the Center for Neurorehabiliation learning how to drive with a bioptic device. It was actually when I had contacted my OT who does my behind the wheel training that I was informed of his passing.  He will be greatly missed by his community.