The Art of Going Blind

I have begun to notice the term “negative space.” I’ve seen it several places lately, usually in reference to art. I doubt the term is suddenly cropping up everywhere though; it’s probably just catching my eye, the same way your own name jumps off the printed page at you.

My husband is thoughtful and measured, and much more likely to suggest than to insist. But this summer he practically forced me into an eye appointment. If he had tried this earlier in our marriage, I would have bristled. But his honesty turned out to be more reassuring than indiscriminate positivity could ever be. I needed some help.

I have read that negative space is a vital component of art. The play between positive space and negative space — a work’s main object and its surrounding space — provides the sense of dimension and perspective. My reading says that without negative space, the main object lacks meaning, so balance is the key. This sounds right.

My previous ophthalmology appointments tended to be a deluge of negative information. The message might be encrypted in medical detail, but the punch was the same: we have no cure, we have no treatment. Yes, well, I don’t see the point in going if there’s no treatment. If you can’t help me, then at least don’t bring me down. In the end, I’ve told my husband, you live life in your own headspace, and the insight I gain from an eye exam doesn’t improve the quality of my headspace. It just throws me off my game.

It’s a fair point, I think. My vision is decreasing, and in some ophthalmologic congruency with “the medium is the message” my doctors have concentrated on what I cannot see. The tests they order are the ones they know I’ll fail. They order scans to show the malfunction. They measure, analyze, and quantify my negative space. It’s depressing. I leave an appointment oddly ashamed of my failure. Yes, it’s irrational, but it doesn’t matter.

Still, I read that the use and study of negative space is vital, increasing the appeal of a composition through subtle means. Perhaps that’s true, but it assumes the existence of enough positive space, and if balance is really essential, then my ophthalmology appointments need some tweaking.

Despite my failing vision, I have avoided seeing an ophthalmologist for years. In rebellion, or an attempt to control some aspect of this, I’ve looked for optometrists who were willing to do a quick refraction and supply me with disposable contact lenses. I’d wear a single pair for months, to delay the next appointment. I know, I know; bad for the cornea. But it left me alone to manage my disease and my own headspace. The problem with this plan, I know now, is that it created an exhausting undercurrent of thought. I tried to remember how everything looked and tried to make peace with it disappearing. I stared at the things I thought would be most difficult to remember — colors, shadows, water — and wondered how my husband could ever describe these things to me, whether the descriptions would make any sense when I couldn’t see, or couldn’t remember seeing. It was my way of working ahead, to blunt the trauma of going blind.

It didn’t work, by the way; it was still a unbalanced picture. Negative space is vital, but only in proportion. Assessment of proportion requires genuine perspective, impossible to achieve from inside the painting.

My husband didn’t find me a random ophthalmologist. He got me an appointment with a retina specialist at the Johns Hopkins Wilmer Eye Institute. I’d never been to Wilmer before, but assumed that my prognosis would be delivered with clinical precision. The gravity of the topic, the emotional weight of blindness were handled by my previous ophthalmologists with careful detachment. Stunningly unhelpful. So, I braced for a similar experience at Wilmer, too. One that would yield a file of disturbing data, delivered at a safe emotional distance for the comfort of my doctor.

I tend to translate bad appointments in my head. Narrow visual field means no driving, eventual cane. A comparison to my last tests reveals the rate of my loss. A quick calculation reveals whether I’m likely to see my kids’ graduations, grandchildren, wrinkles, if retirement travel might include seeing Paris or just smelling it. I could still go for the bread. I could wear my hair in a bun. I could probably fix a bun with my eyes closed. I’ll try that when I get home. I won’t even need to flip the bathroom light. Ever. Lower power bill? I’d end up spending it on Uber; I really should be living somewhere with better public transportation.

When I zone back in I realize I’ve missed the lecture on rods versus cones, or something about the macula. It doesn’t matter. Sort for meaning as you walk to the elevator. Sure, the buttons have braille, but how will I find the buttons?

My latest appointment was different. This team of doctors asked me what I needed. They asked me about my life. We still talked about the details, but it wasn’t crushing or disorienting, because the details weren’t the point. For these doctors, the details were just the raw data they needed to begin a larger process of care. With no rush, they shared a perspective on my situation that I hadn’t been able to find. Details about my vision were presented in context. They infused the worrying implications of my disease with some hope. I thought I was there to meet a team with astounding knowledge of the retina. I was, and they do. But it was the balance of knowledge with compassion that changed my perspective. This appointment actually helped.

There is an art to being a physician, apparently, and some of its power lies in its ability to balance us. It’s taken me days to get used to my new outlook, and it feels a little like Christmas. I didn’t realize how hard I had been working at coping until my doctors made it safe to stop. With one conversation they switched off the hum, an undercurrent of worry that hadn’t even registered until it was gone.

I didn’t sleep the night after the appointment. I sat up on the window ledge at the hotel. I wasn’t thinking. I was blank; I just looked. By sunrise, I was staring at a ribbon of light streaming on the side of a steeple. I’ve seen steeples before, and sunrises, but this one was different. The picture wasn’t bittersweet anymore, because I wasn’t trying to remember it, or imagine it gone. It was just pretty.

In the last couple weeks, there have been dozens of these adjustments, and they all boil down to the same thing. Negative space isn’t crowding out the positive images anymore. The balance in my world view has skewed so long ago, I hardly noticed anymore. It took other people, presenting positive and negative space in artful proportion, to restore some harmony.

I am grateful for the art in healing.