What’s the upside?

It’s pretty clear that there are some sad, difficult things about being married to someone who’s going blind.  I tend to be realistic and honest in most aspects of life, but I also try to be optimistic when I can.  So I’ve been keeping a running list of the positive consequences of Zach’s vision.  When Jack Donaghy asks, “What’s the upside?” this is how I answer.

1. Awesome television set.  Zach isn’t completely blind, and he can see things better if they are bigger and without glare.  So his vision was a great excuse to get a HUGE L.E.D. television.  Thanks, retinitis pigmentosa, for permission to splurge!

2. He’ll always remember me as young and beautiful.  Yes, it can be sad to think that Zach will see less and and less of me as we age.  But it’s also kind of romantic to think that  50 years from now (if we both make it that long), he will still picture me most clearly as I was on our wedding day, young and beautiful.

3. Pre-boarding.  When we travel, we usually fly Southwest because it’s cheaper, but they don’t assign seats, which means two people traveling together might not get to sit together.  But since Zach has a disability, we are able to pre-board, ensuring that we sit together and have ample time/space to get settled.  I think Zach feels a little weird about taking advantage of this, since he doesn’t carry a cane and most people can’t tell he’s visually impaired.  I think he’s afraid people will think we’re faking it or something.  But I don’t feel bad at all, and I don’t care if people think we’re fakers, because we’re not.  It’s actually really helpful to board early, as navigating around people, locating empty seats, and finding an overhead space for luggage can be challenging for Zach, especially if we get separated.  

4. Sometimes he misses on-screen nudity.  Some of the artistic movies Zach and I enjoy  have nudity.  I don’t like it, but I tolerate it.  A few months ago we went to see P.T. Anderson’s “The Master,” and there’s one part (I don’t think this is too big of a spoiler) where suddenly all the women are naked.  I really didn’t understand what was going on (was it surrealism?  was it from a certain character’s subjective point of view?  are the naked women going to turn into frogs?), so after the movie, I asked Zach about it, since he is really, really good at film interpretation.  He had no idea what I was talking about – he was completely unaware there was nudity in the film.  I was a little sad that he missed an intriguing part of a movie, but let’s be honest, I was also happy that my husband wasn’t looking at a bunch of naked women.  

5. One car is cheaper than two.  Zach can’t drive, which is probably the part of being legally blind that affects our lives in the biggest way.  At times it can be inconvenient, and we are limited to living in more accessible areas so Zach can remain independent and mobile.  But at least we save money by having just one car!

6. He might not notice if you steal a bite off his plate.  Not that I have to sneak around when I want some of his food…I am constantly amazed by how generous he is!  Whenever he catches me, he says, “You can have as much as you want.”    : )

Can you think of any other possible upsides to having a spouse with a visual impairment?  It’s OK to get creative!

Hello, World!

I guess a good way to start is to tell the story behind the blog name.  My husband Zach is legally blind, and I love him.

Zach has a genetic degenerative eye disease called retinitis pigmentosa (RP).  Usually, RP causes vision loss in a person’s periphery, resulting in tunnel vision.  Zach’s case, however, is a little different.  He has islands of sight all over his field of vision.  His brain fills in the leftover blind areas, so he perceives a full picture, but can’t really trust if what he sees is accurate.

The progression of RP is highly unpredictable, but vision loss usually occurs over time, sometimes culminating in complete blindness.  In Zach’s case, he lost a lot of vision around age 14, but has been pretty stable over the past several years.  We hope he won’t go completely blind, but we will just take it one day at a time and make adjustments to our lives as needed.  And even if he does lose his remaining vision, it wouldn’t be the end of the world – with the right training, blind people can do pretty much everything sighted people can do!

Depending on how you look at it, Zach’s vision is either no big deal or a huge deal.  It’s no big deal in that the things that make people happy are not really dependent on vision.  Our relationship is great because of love, respect, communication, commitment, shared values, humor, and, most importantly, our faith and redemption in Christ.  None of those things necessitates vision.  Zach is able to work and pursue his interests with no problems.  There are little ways we have adapted our life to deal with his deteriorating vision, but they are really not that hard.  Zach can’t drive, so I drive us places, and we live close to public transportation so he’s not completely dependent on me.  We have a special way of walking together (an adapted version of the sighted guide technique), and I try to verbalize when we approach steps or other obstacles.  At mood-lit restaurants I read the menu aloud.  Sometimes drinking glasses are accidentally knocked over and broken, but we just sweep it up.  Easy adjustments to make.  No big deal.

In another sense, though, Zach’s vision is a huge deal.  The adjustments I’ve talked about are easy enough, yes, but they also indicate that blindness affects nearly every aspect of everyday life, and constantly dealing with that reality can be exhausting.  It can also be difficult for outsiders to understand.  Zach wants to be known for who he is (which is an amazing, smart, funny, interesting, handsome, godly man!), not for his blindness, so right now he chooses to walk without a white cane (the international symbol of blindness).  It’s not that he’s ashamed of being blind, or even that he doesn’t want people to know, but he’s afraid that with the cane, people will treat him differently.  And there’s a reason for that fear: people do treat him differently.  Eventually, he might have to carry the cane, which would be fine, but for now since he can get around without it, he chooses not to use it.

I think the biggest obstacle for Zach is the social effects of blindness.  He does not have access to the social cues we sighted people take for granted.  Facial expressions are completely lost.  When most sighted people try to imagine being blind, they often think about how difficult it would be to walk around without running into things, but those skills can be learned easily and are not the true onus of the blind person.  Imagine sitting in a circle with your friends (so there’s no risk of running into anything or anyone) and trying to relate to them with your eyes closed.  That would be hard!  Now, imagine sitting in a big circle with a bunch of strangers and trying to make friends with your eyes closed…for me, a born-and-bred introvert, that sounds like torture!  It also sounds incredibly exhausting.

Zach has had most of his life to process and accept his vision loss, but all of this was introduced to my life fairly recently, when we met in 2011.  So I feel like I’m still learning and processing what his vision means for me, for our relationship, and for our future.  This blog is designed to document my process and experiences in being married to Zach, my legally blind love.