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August 12, 2009 by 8junebugs

In my last post, I referred to some challenges that G and I face. I did say they weren’t unique, but I understand they may seem so. They also may seem very, very confusing, particularly if you see him using a white cane and then see him watching TV or reading email on a PDA.

This weekend, though, while I was primping with the rest of the wedding party, a good friend assisted us by escorting G to the ceremony and cocktail hour (we swapped dates for a while, actually — her husband escorted me into the reception), and I found myself trying to explain how to guide someone who can sort of see, but not really.

Generally speaking, this is not my story. I may write about my small part of it from time to time, because there’s still a lot of learning ahead and that’s the kind of thing I write about here, but they’re his eyes, not mine. I do want to clarify a bit, though, and maybe give people a better idea of what to expect from us, logistically speaking.

When G was a teenager, he was diagnosed with Retinitis Pigmentosa, a degenerative disease that has left him with extremely low vision. Put simply by the American Foundation for the Blind:

Degeneration of the retina, resulting in decreased night vision, a gradual loss of peripheral vision, and in some cases, loss of central vision. The degeneration progresses over time and can lead to blindness. Retinitis pigmentosa is a rare, inherited disease for which there is as yet no treatment or cure. Some opthalmologists believe that treatment with high doses of Vitamin A can slow the progression of retinitis pigmentosa, and that taking Vitamin E makes it worse. Early diagnosis enables a person with the disease to plan and prepare for its progression. In addition, depending on the degree of vision loss, electronic magnifiers, night-vision scopes, and other such special devices for impaired vision can provide some benefit for people with the disease.

This does track his experience with RP pretty closely. It was diagnosed early and he learned to cope very, very well — he managed to do a lot of things that probably made it easy for people to forget he was going blind.

He made the decision not to drive. He had the option, though, even with no real peripheral vision and rapidly declining night vision. (Makes you a little nervous, doesn’t it? There was a case about a year or so ago about a kid with RP driving back from Tahoe — he missed a turn and that was the end of him.)

Technically, G is legally blind. Practically, that means he can see within a very limited range in good light (particularly fluorescents), unless there are competing lights. For example, if a room has overhead fluorescent lighting, that’s ideal…unless there’s natural light coming in the windows, which will create a glare or backlight someone or something he might otherwise see. If he goes from one kind of lighting to another, it will take at least 20 minutes for his eyes to adjust.

In dim lighting or semi- to full darkness, there is no difference for him between legally blind and completely blind.

“Limited range” looks like this, by the way (courtesy of Foundation Fighting Blindness):

From these pictures, it might be easier to understand how G can see you but not see the person standing next to you (note that those are kid faces, too, not adult ones), or why he takes my arm and uses a cane on the street but can fill out a deposit slip and deal with an ATM without help.

G has said that he accepted the condition long ago, but didn’t really have to live it — the people around him had been around him forever and already knew about his eyes, particularly before he decided to go to grad school in New York, 3,000 miles away from the people who’d known from the start. And it’s difficult to know when to say, “By the way, I’m pretty much blind, but not quite.”

I think the same is true for us — there were no receptions to attend in romantically lit ballrooms when we were 17 and 19, and we’ve been to (and greatly enjoyed) two this summer. We’re starting to learn how to handle this as a couple in the real world. It doesn’t mean hiding away or only going to parties held in fluorescently lit hallways with no windows…it just means thinking ahead, plotting a course, and asking for help when we need it.

There are trade-offs. Like any couple, we discuss and decide and compromise and argue. I do tend to get the deciding vote on whether we go somewhere or do something, because getting us there and back will be mostly up to me. (When the light allows, I make him navigate.)

A trade-off example: Last week, I got to basically refresh G’s professional wardrobe, and more than one woman has said to me, “Oh, that’s so cool! I never get to dress up my husband.” It is fun to play dress up with a grown man, but it also means creating a code to help him match up suits with the right shirts and ties. And it means realizing that a written code may only work for so long — eventually, we will likely need to organize the closet so he can find what he needs by touch. But doing that enables him to be more independent, which is better for both of us.

G has also pointed out that he’ll never be able to drive me to the hospital when I go into labor. I care less about this than you’d think, partly because we will always live where there is good public transportation and reliable cab service. That is non-negotiable. And some form of car service will need to be part of our budget at some point.

Mostly, though, I don’t care about it because a driver’s license isn’t a requirement for being a good partner. No one has ever understood or loved me better than G, and that’s all that matters — he may not see everything, but he sees me…very, very clearly. The rest is just logistics.

I am adjusting, though, to the real-world realization that we live it (physically or virtually, depending on the day) and a lot of folks are unaccustomed to being around someone with a disability — particularly this one. No one has been rude (I have mentioned that I only associate with awesome people, haven’t I?), but it’s understandable to not automatically know how to interact with someone who (probably) can’t see you.

If you’re curious, the American Foundation for the Blind has some tips on “Tact and Courtesy” (it’s okay to say “look” or “see” even when someone can’t) and “Communicating Comfortably” (e.g., please speak first — someone who’s blind won’t know you’re there if you don’t tell them).

Also? It is totally okay to be curious and ask questions. I mean, I speak only for us on this one, not the entire community — we’re both just big believers in asking and knowing being better than avoiding and guessing.

It is less okay to openly stare at someone, even if they can’t see you — the rule your mama taught you about that one still applies. (Just so you know, the person guiding them can see you, and might stare back if she’s feeling a little salty. I’m looking at you, loitering men on Washington St. last Sunday.)

I’m sure there are posts to come on the adventure of arranging a life around special circumstances. For now, though, this about covers it.

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