So far the only expression I have used is "losing my legs." It is the basis of a second children's book Chris Bivona and I ran with. I use the expression a lot.
This does not mean that it is not scary as fuck to lose your vision.
My only condition to letting my doctor send a nurse to put a pump in was IF I ever lost my sight. And voila, a few weeks ago that began to happen until one was covered; not in black or darkness, more like a sheet. But not bright white. Rather, it was colorless and cold.
Life is doable with with one eye. It almost feels like you lost one eye contact. But then something wonky starting happening to my other eye-which is atypical.
I told who I needed to tell. I work with one of my dear friends. I live with the most devoted husband. We managed. But again, it's one of those things you fake with a trembling heart. But when with loved ones you lie your ass off, save that ONE friend who you can be vulnerable with; the one friend that considers it an honor you share scary shit with them, even if it scares them too.
Never take THEM or LIGHT for granted.
There's always that negative girl inside me that says, "You could be one of the 2% it doesn't come back to!" And then blows a puff of shitty smoke rings in my face just because it can.
So I had a plan, ignore. The more I relaxed and dismissed, the sooner it would calm down and come back. I had to be realistic though, when it got BAD bad, I did not drive etc. When I got home and my husband was here, I slept. It is all my body wanted. This weekend was me, pretty much not moving despite the many awesome plans I had...err..planned?
But it hit me last night, I could read on the television what I couldn't read in the morning. Today, I did not move. I opened my eyes in my bedroom a little while ago and I noticed the light changed. It was moving and shifting, bending across my body. It can caress me as long as it is telling me it is coming back. I'll take it.
So I took these pics. This is what it looks like to be in your room all day. Sick before your infusion. Weeks after barely seeing. Warm light! The kind the aides and abets seeing the world! I am so so joyous to see it, but the thing about light, is that it is NOT ONLY meant to be seen. I could have no eyes and I could feel it like a motherfucker. It can be heard in a beautiful song as well. I would find it again without sight. And yes, I realize I am tempting the universe's irony by saying that out loud.
I have an innate understanding that my eyes may forsake me, but the light never will. It is called faith.
But I figured, for now, but be forewarned, I'd share boring bedridden pictures. They are boring. Although, being bedridden isn't half-bad when you are exhausted. One is lucky to have a bed when one is exhausted, most have to try to go to work and fake it. But then you get crazy and start watching things like Forest Gump. I put so much on in the background, as I sleep. But it can be exciting when the light begins to mess with you. When you catch yourself wondering, "What the heck is stinging my eyes?"
When it folds over every inch of your boring, Carolina Blue bedding, and your tired body realizes it. It is a gift. I will take any light that is assigned to me; let it be spiritual (albeit physically dark) or what not. But I can't pretend that didn't scare the bejeesuz out of me. Whatever light we address, it is not to be taken lightly.