The Inbetween Space

September 20, 2016 at 5:14 PM | Posted in Change the World, EYE believe | Leave a comment
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I had initially written a bunch of this post already and was having a hard time writing stuff down. Mainly because I was trying to explain something instead of just writing the truth. The emotion behind it.

As I’ve said before I’m in this weird middle ground where I’m not sighted enough for the sighted world and too sighted for the blind world. I am legally blind according to some words on paper somewhere that says my field of vision is too small to be normal, or whatever that means.

But no matter what terminology you use, I’m stuck. In an Inbetween Space.

(Screw you autocorrect, I don’t want the hyphen in there, just deal with it.)

As I lose more of my vision I become more understanding and empathetic to the life of a person who is blind.

But six months of sleep shade training is not going to erase the around 35 years of my 36 that I was legally sighted.

Also, I still see so much. Most people don’t understand that. I may have a field of vision of 10-15 degrees with some wacky missing areas, but do you know how much of the world I see?

Look how much the Hubble Telescope sees in one small section of the Universe. It sees so much but it will never be enough.

I don’t see enough to get around without tools that find steps that look like a flat surface because they’re all the same color, that find trashcans that hide in the weird missing spaces, that let others know I may not see them as I walk by. I don’t always need screen readers, but I know how to use them when my eyes get tired. I know braille, but I read it faster with my vision than with my fingers.

My eye disease is a genetic disease and science is doing wonders with genetic research right now. There’s a foundation that I’ve followed for many years because they are working on research for my defect. because that’s what it really is, its a defect in my genes, not a disease really. But them along with some other groups are getting really damn close to amazing things. Like ten years from now close. As in, in ten years there could be a treatment to halt the progression. And even not long after that, possibly some reversal of the damage is possible.

How fucking exciting is that?

Now, don’t worry, I’m a realist and let’s be honest a really good pessimist. My hopes are there but I know it could easily not work for me at all, or it could all just fall apart. (What with science deniers and insane people trying to get into office. VOTE PEOPLE! Its too scary not to!)

So I know that there is a path in my future that could be complete loss of vision.
And I am prepared.

With skills.

Not with my emotions.

There are no amount of skills and knowledge that make me unafraid of that future.

My fear is valid.

I am allowed to have this fear.

That foundation I have been following has a fundraising campaign right now that asks people to try to do things while blindfolded. Kind of like the ice bucket challenge. I thought it was a neat idea because it let’s those who are sighted get that initial fear of being suddenly blind and having to immediately live their lives by doing tasks they would do everyday or were skilled at.
I was beyond thrilled when an actor that I admire took part and tried out his dancing skills under a blindfold. I was so happy to see him taking a moment and stepping a toe into this new world I’m slowly joining.

Some say my heart grew three times that day.

Now, I am also part of an organization that is very independence oriented. Fighting the good fight to show the world they can do everything anyone else can and should be allowed to without restriction or prejudice. I agree with that for sure. But right now they seem to be upset with the fundraising campaign the foundation is doing. They feel it is perpetuating a negative view on those living with blindness. I can understand this to a point.

However, those 30 something years of my life as a sighted person has it’s hackles up at that reaction.

I’m torn.

Yes it’s not an accurate description as those with vision loss have training and tools to assist in doing those everyday activities.

But how is it not a good thing to start a conversation?

How many of those people you think who tried this out didn’t ask as their first question afterwards “How do you do that?”

I know it’s often my question after trying something new.

My biggest problem with all this is the eradication of fear. yes it’s good to show the world that those with vision loss can do whatever they put their minds to, but why is fear not allowed to be there?

Why am I not valid?

Why am I being erased?

Am I taking things to personally?

*looks at past blog posts* Have you met me?

Of course I take it personally.

This is who I am.

A person who is slowly going blind and is scared out their mind about it. I’m not one to be all hunky-dory about it. I want to be real about this. It’s fucking scary.

I know I will be just as capable as I am now when I lose the rest of my vision.

But I’m scared of what I will lose. And I’m allowed to mourn that.

Color.
Facial expressions.
Clouds.

These are the things I will miss the most.

But why am I not allowed to feel this way?

Why am I not allowed to hope for a cure?

Why is there venom towards a group trying to start a conversation? There is a call to join in and add their own videos to the campaign to join in the conversation. Which I think is great, but it feels liken attempt at a hostile takeover.

Maybe I’m blowing things up out of proportion but these are my emotions.

My emotions are valid.
No matter how much or how little vision I have.

And please check out howiseeit.org
I think it’s a great conversation starter.
If you have any questions, please ask me.
Please ask someone questions.
Be a part of the conversation.
And donate.

Also also, if you are in disagreement with me I honestly would like to talk about it. Please. Truly.

I don’t want to invalidate anyone else, I just want to fight for my mind right now.

(PS I will be changing the name of this blog soon as I don’t think it’s appropriate anymore)

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