“Does blindness run in your family?”
That was the doctor’s way of casually announcing that my wife was losing her eyesight in the spring of 2007. My wife and I felt like we were thrust into a game of hangman. We were the stick figure dangling from the noose and he was the person guessing letters. Every word out of his mouth felt like another wrong answer.
We were devastated. We had only been married for a few short years. The eyes that I fell in love with might not be able to see me someday. After a series of tests, we learned that Suzanne has Usher Syndrome with Retinitis Pigmentosa. It’s a hard phrase to say and an even harder phrase to live with. It means she is progressively losing her eyesight as well as her hearing. She loses as much as 12-17% of her vision each year. Her world is growing darker and she doesn’t have the option of just flipping a switch and turning the lights back on. I say that Suzanne’s eyes are like stained glass: beautiful to look at, terrible to look through.
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In all my childhood fantasies about falling in love, I never pictured my dream girl going blind and deaf. I pictured the textbook “happily ever after.” But our story unfolded differently. If our love were a rom-com, Rob Reiner would have written the script. I would be Westley. She would be Buttercup. But the whole movie would take place in the Fire Swamp, a love surrounded by spontaneous fire, sinking sand, and rodents of unusual size!
When you vow “for better or worse,” you don’t anticipate what worse could really mean. While the crowd cheers, no one leaves the altar thinking about what could possibly go wrong… that the woman holding your hand might one day need you to hold her hand to navigate stairs, parking lots, restaurants, or your own living room… that the girl who says if there’s ever a fire, the first thing you have to rescue is the wedding album even though she might not be able to see those pictures someday. These things don’t make you love less, but they do make you love differently.
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While Westley constantly says to his one true love, “as you wish,” I have found the art of doing life together much more challenging. I’ve learned to value one of the shortest prayers from Scripture: “Lord, save me.” (Matthew 14:30) While Peter said this three-word prayer to be rescued from drowning in the Sea of Galilee, I say it daily to be rescued from drowning in my own murky thoughts. I pay a therapist to help me work through my emotions: feelings of resentment, bitterness, and impatience.
Our daily life is completely different from when we started dating. My wife’s challenges have completely changed the axis of cooking, cleaning, driving, and parenting. I choose to be my wife’s eyes and ears, and she lovingly calls me her seeing eye Dan. While most couples hold hands as a form of affection, we hold hands as a form of loving protection and direction. We took a class on how to use hand signals to indicate obstacles and minimize bruises.
One seismic shift is our date night tradition. We both love movies, as you can tell from ”The Princess Bride” references. Spending time together often involved going to the local movie theater. We loved everything about it, the smell of popcorn, communal laughter, maybe not the sticky floors. But because of my wife’s challenges, we avoid it now. Navigating the dark theater was too stressful and movie music is often louder than the dialogue so it’s hard for her to follow the plot. Now, we watch movies at home where we can put on closed captions and I can pause the movie to explain what’s going on if she needs it. A benefit is that we get to interact with the movie without hearing, “shhhhh!”
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My feelings are often double-jointed. I grieve for what my wife is missing and grit my teeth when her “can’t do’s” become my “have to’s.” There’s a constant tension between empathy and self-pity. I think love sometimes comes down to the direction you lean the most. When I want to quit, I lean towards empathy. I lean towards patience. I lean towards grace. I lean towards my vows, “for better and worse.”
One of my favorite metaphors when it comes to the relationship between Christ and the Church is marriage. As a husband, Jesus shows constant servanthood and sacrifice when it comes to his bride. We see this clearly when he kneels down in the dirt and washes his disciples’ feet, the very feet that were going to run away from him during his hour of greatest need. When my wife and I got married, we included foot-washing as a part of our vows. My wife and I did this ceremony as a way of saying we were going to serve each other as Christ graciously served the Church. Like Christ, I’m willing to not only wash my wife’s feet but also hold her hand as we both walk into the darkness of whatever the future might bring.