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!

Born Blind vs. Becoming Blind

In my inaugural post, I briefly mentioned the social effects of blindness/visual impairment.  These social effects are influenced largely, I believe, by either being born blind or becoming blind.

Before I met Zach, I briefly dated a different blind lawyer (foreshadowing, I guess).  I’ll call him Ben.  Ben was born completely blind, and he had several endearing quirks.  Whenever something pleased Ben, or whenever he thought something was funny, he would snap his fingers or clap his hands, in addition to smiling and laughing.  He was also very social, having no problem striking up conversations with strangers.  And sometimes, he would talk very loudly.

Eventually, I started to think that these behaviors might be linked to his blindness.  When I want to express happiness, a smile is enough, but for Ben, who’s never seen a smile, it has less communicative value.  He would still smile when happy, because that’s a natural physiological response, but it was probably difficult for him to understand how others interpret his smile (since he has never visually interpreted one himself).  He understood auditory feedback (like snapping and clapping) better, and therefore he used it more.  In essence, he was treating others as he would like to be treated.

Ben was also extremely social.  At first, I assumed this was a personality trait, but after meeting a few other born-blind people with similar expressions of extraversion, I wonder if his personality trait was intensified as an adaptation to blindness.  Being blind and alone in a crowded room can be confusing and overwhelming, and taking charge socially probably mitigates one’s fear, awkwardness, and risk of embarrassment.  Instead of submitting to a social situation where it would be easy to feel powerless, Ben gained control by creating his own social situation and getting others to submit.

Statistics say that 65%-80% of communication is nonverbal, including body language, eye contact, facial expressions, volume and cadence of voice, etc.  Think of how much communication is inaccessible to a person who can’t see.  For a person who is born blind, and has never received communication through eye contact and facial expression, perhaps more weight is placed on verbal communication.  Maybe Ben was trying to squeeze in more communication-value by being more verbal.

Lastly, there were times when Ben would talk very loudly.  This would happen most commonly in already noisy environments like parties.  In situations where a large group of people would naturally split into smaller conversations, Ben was usually audible over everyone else.  My theory is that it was difficult for him to tell if people were still listening, since he couldn’t see if they were looking at him and nodding, and so he talked louder in order to keep people engaged.  After all, imagine how embarrassing it would be to realize that you have been talking for ten minutes and no one was listening to you!

These were just some of my observations about the behavior of the blind (mostly from Ben, but also from a couple of others), so when I met Zach (the first person I met who is visually impaired but not completely blind), I was surprised that he didn’t exhibit any of these (what I thought were) typical characteristics.  Now, I think it is because he was not born blind, but is becoming blind.

Even though Zach often misses other people’s smiles, eye contact, and other facial expressions, he is aware of their social and communicative value because he’s experienced it in the past.  Even though it might make social events easier if Zach took charge and introduced himself to everyone around, his personality is set – he’s an introvert, and it takes a lot of energy out of him to socialize with others, especially strangers.  Unfortunately, his vision only makes things more difficult, and he becomes even more timid.  And even though talking louder might be a good strategy for ensuring that people are listening to him, Zach doesn’t want to be annoying, and instead will keep his comments short in situations where risk for embarrassment is high.

Behind all of this is the universal tendency to assume that other people perceive reality the same way you do.  We all do this all the time.  Even the golden rule, “do unto others as you would have them do unto you,” seems to be predicated on the assumption of a shared perception of reality.  Sometimes, how I like to be treated is the opposite of how other people like to be treated.  Really, I think the golden rule can be explained, “do unto others as you would have them do unto you if you were were in their shoes.”  But how can we know what it’s like to be in another person’s shoes?  Even if there is an objective reality (and I believe there is), each person’s perception of that reality is going to be different.

People who are born blind have an incredibly different perception of reality than sighted people, and even from blind people who were born sighted and later lost their vision.  They communicate in ways they understand and appreciate, because visual communication means nothing to them personally.  Zach, on the other hand, who is losing his vision, understands visual communication on a personal level even though now it is nearly inaccessible to him.  In some ways, this might make his social obstacles bigger than if he had been born blind and learned to adapt as his personality was still forming.

Of course, there are other differences between being born blind and becoming blind, but this is one of the major differences I’ve observed from my limited experience.  Each side has its positives and negatives, but in the end we all have to play the cards we’re dealt, learning to accept and adapt to whatever hurdles arise in our lives.

Have you noticed any differences between people who were born blind and those who became blind?

Hiking

One of my favorite activities is hiking, so of course I was really excited when in 2010, I moved to Colorado.  I could enjoy some real mountain trails within reasonable driving distance of my home!

When I first met Zach, I told him how much I like hiking, especially to mountain lakes.  We went on a few amazing hikes together, taking things slowly because of Zach’s vision.  We summited Pike’s Peak…

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[Us at Pike’s Peak Barr Camp, August 2011]

We went hiking in Estes Park, where we had a close encounter with wildlife…

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[Elk in rut, Rocky Mountain National Park, September 2011]

He even proposed at the top of a waterfall!

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[Waterfall not shown, November 2011]

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[There’s the waterfall!]

But, as time went on, Zach’s true feelings came out.  He likes hiking too, and he especially likes doing things that make me happy, but it is very difficult for him.  It’s not that he falls down more (I think he and I are pretty even on our hiking stumbles count), it’s just that the constant vigilance about unpredictable terrain kind of sucks the fun out of it for him.  And if he’s not having fun, it’s hard for me to have fun.  I want to be able to help him hike better, but it is really hard to describe upcoming obstacles before it’s too late.  In suburbia, it’s easy to say, “three steps up,” but out in the mountains it’s more like, “there are three big rocks and the top one is loose so you can avoid it by staying to the left but watch out for those tree roots” before he’s already slipped a little bit and there’s a new obstacle that I’m trying (unsuccessfully) to describe.  He’s lucky to have exceptionally strong ankles.

This has led to a bigger problem for us.  If he doesn’t want to go hiking and I do, he feels guilty, like he’s holding me back.  If we go hiking anyway, we can both get frustrated, which means neither of us enjoys it.  And then I feel guilty for “forcing” him to join me on a miserable adventure which now not even I am enjoying.  I know that I shouldn’t feel guilty –  it’s his choice to come or not, and he is really good about speaking up when he’s had enough – but I can’t help it.

We’ve tried to come up with a few solutions to this problem.  The first is that we join a hiking group for blind/visually impaired people and their friends.  There is a group in our area called VIBeS.  We are excited about this because we would both enjoy the group atmosphere, as well as giving both me and Zach training for how to make hiking an easier and more enjoyable experience.  The problem is that our schedule has prevented us from going to any of the VIBeS events so far this summer.  Bummer!  I really hope we can go in the near future.

Another solution is that I go hiking without Zach.  Recently, I have been trolling some hiking-oriented Meetup groups, which would be an organized group of strangers going on a hike together.  The idea is to make those strangers your friends, which could be fun, and the Meetup groups I’ve been looking at are big enough for me to feel safe attending.  So I geared up and RSVPed for a Meetup hike today…and then chickened out.  It just sounds so socially intimidating!!  I want to hike, but am not sure I have the courage to show up to something alone.  Sigh.

What do you do when meeting a group of new people for the first time?  How do you approach an intimidating social situation without the safety net of a friend with you?

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.