Friday, April 1, 2011

Living Is Easy With Eyes Closed... Right?

I did a little bit of thinking about my sight this week. It's been really sad. I am fine Today, and sometimes the Yesterdays sucked, but even though are okay. I'm even fine with Tomorrow. What bothers me is Far From Now. A time that I can't even fully comprehend, because it feels so far away. It may never come. I could die before this moment. The times I'm dreading are so far away, the whole world could die in the meantime (as long as the History Channel claims are true).

Whoh, back up, Depresso. You superhuman ability to look at life through gray-colored glasses isn't helping anyone, especially not yourself. That time, the time I fear, will most likely come. (Way to add some Rose to those lenses....)

My sight is diminishing, and I'm somewhere around five to ten years left of any residual vision. I will eventually come to a point where the majority of my life will be spent Not Seeing. Opening my eyes, seeing what I can of this world, just feels so deeply connected to Being Awake. And living. Knowing that it won't be is just ..... weird.

I don't look forward to the days when I'm exhausted by the effort it will take to cross a room. I'm really sad about it, if I'm going to be perfectly honest. The stuff about not seeing my kids grow and age, and possibly missing out on the sights of foreign countries or beautiful art, IS an issue for me, but it's all stuff I'm easily comforted in. I just feel blessed that I've seen my kids at all, and that I'll be able, hopefully, to enjoy their presence in other ways. And travel and art are such wonderful things to want to embrace, but those things can border on White People Problems, and I mostly feel ridiculous about being too sad about them.

Still, what bother me is the Everyday of being blind. I'm sad about having to change habits that are comfortable and familiar, and I'm sad that my quality of life will feel less unaffected by how others embrace and consider me. I feel sad that I'll sit in rooms and feel out of the loop in some conversations. I'm sad that the way I dress will be mostly my choice, but partly the choice of people I choose to trust to help me.

These are the things I'm sad about today. Tomorrow I'll be fine.


teamBoo said...

This is heartbreaking. If they can give a transplant a functioning (albeit freaky looking) guys hand...or an ear onto a mouse's back (and that was like 20 years ago!) they've gotta be just around the corner to giving you some better eyeballs, right? What is your actual prognosis? (you've probably said before) freak, I can't even take the anxiety of a looming homework assignment...This is way loomier :( sorry friend.

Renee said...

I have Retinitis Pigmentosa. Officially, I have about 8 degrees of vision (to your 120-180 degrees). I have color, but it is not the full spectrum, and most light makes everything look like it's a muted version of what it actually is. So Oranges and Reds look the same, and Purple and Brown, and so on. I have no night vision. If you shine a light in a darkened room, I can tell, but there is no real shape to anything. As I get older, this will be true for even the brightest of rooms. And then, I'll lose the light perception.

On the plus side, I can smell you from here. (JK)

The Wizzle said...

I hope this doesn't sound cruel, but I love hearing about your thoughts as you go through this, and think about going through it. I'm so sorry that you have to wrestle with it, that it is part of your life, but I am grateful that I get the chance to hear what it is like for you. I feel like it makes my world bigger and my heart softer.

Sarah Beau Bera said...

I have erased all three of my previous comments, and have decided just to say "I read your blog today and I am your friend" and now I have to stop commenting so Evan can hear the "baby oh" post again.

Anonymous said...

Oh, Renee Renee. I think about your eyesight probably way too much for someone several states away, and I am scared right along with you. Maybe that's one reason I wanted to visit. I met you, I met some of your friends, I met some of your family, and it makes me feel better to know that you are surrounded by people who will make sure you're not wearing T-shirts that say I HEART STRIPPERS. Everything about you and your family is beautiful. But I still worry on your behalf.

Becky said...

Sometimes I'm more concerned about what Steve will be trying to wear when I can't see him at all :). Love from someone that can relate to this roller coaster at times, sometimes REALLY overwhelming, and often not a big deal. Crazy!

DG said...

Great post. I can hear myself doing that, "what will I do with myself in __ years." It feels like an impossible situation sometimes, and other times it feels toatlly doable.
I'm already probably a candidte for what not to wear, so there's that....

Melissa K. said...

Renee, I wasn't going to comment... because I don't think you're looking for platitudes like "at least you are appreciating what you have while you have it" or "they're making medical advances every day" or the laughable "better the devil you know than the devil you don't." Nor do I think you're particularly interested in "you are my mommyblogger HEROINE" (although you are certainly on my short list!)

Instead, I'm de-lurking here with a semi-change-the-subject question: have you considered a dog? Meaning a trained guide dog, certainly, and maybe you don't yet "qualify" for such a beast, but -

I read your paragraph about the Everyday of being blind several times... I agree, it's very sad to have to change habits that are comfortable and familiar, and losing Quality of Life is truly a Very Big Deal, no matter how you slice it. And I had a thought, that if you started a "new habit" now, while you're still Visually Enhanced to whatever degree, it could be a more comforgable habit by the time it becomes Necessary.

And maybe that could be working with an assistance dog.

When you go for walks with your lovely children, when you cross the room in any light or no light, when you are looking for a pen because there's got to be a pen here SOMEWHERE, yesterday there were seven pens right on this counter, etc, etc. Plus, if you got a dog sooner rather than later, you could be assured that nobody pawned an UGLY dog off on an unsuspecting semi-sighted chick like yourself.

Now, I don't sell dogs, and I don't even sell dog links or dog-related accessories. Maybe you're allergic or you just hate 'em. But maybe this is something to think about?

Or maybe, you just need less History Channel. Hmmm.

Much love from
Your Reading and Lurking Friend